March 19, 2014

To celebrate the four years that have passed since I got sick and went into the hospital I

-practiced standing unassisted on rocking boat in the ocean

-rented a bike and pedaled around the island of Key West.

-thanked God for doing for  me what I couldn't do for myself.

-thanked Him again for the people who held me up and for the ones that loved me when I couldn't.

Sunday Gratitude

In the last week I washed the car, mowed the lawn, trimmed the edges, moved a bunch of dirt, built another garden box and moved it, dusted the house and swept the floors.

I've been so busy trying to get this stuff done that I forgot it wasn't that long ago I couldn't do them.

The bill for this physical activity has been coming at night, when the cramps and spasms.  Poor Adrienne, the other night she woke up to me pleading, "Help me!"

It is easy to think that being pain-free is a right, when it is really a privilege.    Same for mowing the lawn and the other things I mentioned in the first paragraph.  I love that I can do these things, including having a rough, painful night without narcotics.

I feel so good right now.

My Gratitude List

I have been feeling a little gunky emotionally lately.  New tough time of year, I guess.  I have been so busy thinking about what happened last year that I am scaring myself.

People used to comment on how, during the worst of it,  I was keeping my spirits up, that I had an optimistic attitude, and I was relying on God to see me though the bad days and bad moments.  To my thinking that was because I was making the choices to do those things.  I didn't want to get lost in fear and despair.  It was like a big hole in the road that I could either go into or go around.

Sunshine and Unicorns

Today is more than just a good day; the weather has been kind, permitting me to go about outside in the (semi) warm air and sunshine.  Plus, I have more energy than I've had in a long time. It is a great day. 

I picked up my ankle-foot orthotics yesterday.  I am still a little uncomfortable with them, but I know that is just until I get used to them.  They have been very helpful.  I had them on for about two hours today while I went grocery shopping and I was amazed at how much of a difference they make.

There was more that I wanted to share, but I am tired, so it is off to Napland.

Monday's update

As always,  my appointment with Dr. Boughaba had an anxiety relieving effect.  I consiuder myself very fortunate to have found her.  We talked about finding a new neurologist in Statesboro and she is willing to help with the search.  That was a big relief because I hadn't been able to find any neurologists there that specialized in CIDP like she does.

Chronic inflammatory demyelinating polyneuropathy is not a progressive illness, it is an intermittent condition.    She was concerned that I might be having a flare up when I told her about feeling more fatigued lately and off balance more.  She proposed extra IVIg treatments for now.

My day out

Monday, January 31, 2011 10:43:47 PM

We woke on Wednesday morning to a house with no electricity which meant no heat, to Internet, and NO COFFEE. There was a huge ice storm in South-West Ohio last night, leaving everything coated in glass. It is very pretty to look at, but getting out of the house to find heat, Internet and good coffee was pretty tricky.

Knowledge to carry it out blues

Tuesday, December 28, 2010 10:47 AM

This is the last day of 2010 and I do not intend to reflect on the year past searching for clues and encouragement to face the year ahead. 2010 was a pretty turbulent year for me and I am looking forward to seeing it disappear my rear view mirror.

Not that it was all bad; to be truthful, the good far outweighs the bad. There was plenty of change for me and change is almost always a painful experience. Anyone who has quit smoking or some other deeply ingrained behavior knows this. At least with smoking or eating, there is some sort of physical record. I can see myself cadging a cigarette from my neighbor or eating peanut butter out of the jar at midnight to know that I have not given up smoking or grazing.

If you love something, let it go to Florida

My son Alex came to Ohio this summer to help  out when I was bed ridden. He spent months caring for me, helping me exercise, helping me get in and out of the car, and so many other things the list could go on. He also took on several house hold tasks to help Adrienne. Whenever we needed him, all we had to do was ask and he was right there. Even in the middle of the night, I could call  and he would come to roll me over or reposition the pillows so I could get back to sleep.

And he did everything with a smile. His cheerful attitude and sense of humor kept our spirits up all through the summer. His love of word play would remind me that life is meant to be enjoyed, not endured.

But Alex is  a sun child; he doesn't like cold weather. Knowing this time was coming, he has been working on getting himself set up with a place in Florida. He is leaving tomorrow, first thing in the morning. We will miss having him around.  

The truth is, I will never be able to repay him for the kindness and the generosity he showed me this summer. He gave me something I could never afford or repay myself. I guess that is the best definition of “gift” I can find.

Al & me, Summer, 2010

Return

Sunday, October 31, 2010, 9:04 am

 Adrienne and I decided to make a trip to Norwalk, my hometown.  We considered this  to be a "dry run" for our upcoming trip to New Orleans in November.  This was my first overnight trip since I got sick.  In fact, the last trip I took was to Norwalk, in March 2010, was right before my first hospitalization, and before I was labeled a fall risk. 

 Adrienne and I drove up to Norwalk, usually a 4 plus hour drive, on Friday afternoon.  Due the the vagaries of  Columbus traffic,  the trip took over seven hours. My hips were sore, but other than that, I was fine.  I think Adrienne, who had to do 100% of the driving, felt worse than I did.

I spent the first 18 years of my life in Norwalk and now, when I came back to it, it has become a mythological place.  Usually, I roam the the familiar landscapes, searching for something.  Driving around the streets with Adrienne, I realized that I don't know what I am looking for; is it something that I lost, or is it something that I never had, but hope to find?  

Anyway, despite the weirdness of being in Norwalk again, the visit was a success.  I survived the car trip, staying in a motel and had a great time with my family!

We visited Mom in her room at the nursing home where she has lived since Dad died in 2007.  She was in a happy mood, but not very talkative.  She looked good and had a big smile on her face.  We joked around and she laughed with us.  

Next we went to Jim and Joanne's. I was feeling pretty tired and ended up taking a nap on their couch.     I am still easily fatigued.  It was embarrassing to have this happen in front of my family.  When I woke up, I was treated to a visit  with Jennifer and Jessica, their daughters, and Jennifer's children, Clark, age 2 and Gwen, 3 months.  

Then we went to visit my sister Roni and her husband, Dick.  Due to complications from knee replacement surgery, Roni has spent the last two years in great discomfort.  She is just now beginning to move freely outside the house.  It was very exciting to see her walking pain free and without a walker.

We returned Saturday evening, tired, but elated from being with the family.  Getting to met my grand niece Gwen and seeing how far Roni has come were also causes for celebration.

1:41 pm

Better all the time

In August, my neurologist began to adjust my medication, slowly backing off the steroids and reducing frequency of my IVIg infusions.

I certainly don't mind reducing the steroids; the psychosis, diabetes, and whatever else the medication is doing to me are awful. I knew I wouldn't miss spending an entire week each month at the hospital to get my infusions.

The neurologist told us to keep an eye on my symptoms.  If there were any regression, we were to let her know immediately and resume treatment at the previous levels.  The symptoms haven't returned and I am glad to have gone from 80 milligrams per day of the Prednisone to 50 a day and get my IVIg infusions once per week instead of 5 times (one a day for 5 days in a row) a month.

Today my physical therapist and my occupational therapist told me that I am continuing to get stronger!   Take that, CIDP!

Presently I am spending more time on my feet than in my chair.  I walk around the house with a cane or steady myself with what ever is handy.  Lately, I've taken to using the cane outside the house, leaving the chair at home.  When I am tired or feel like I can't trust my legs, I get back in it.  Fatigue is still a concern;  when I get tired, I am done.

Besides the fatigue, my hands and legs are coming along nicely.  The numbness and tingling in my hands is almost completely gone and the strength and dexterity are returning. I am still prettyretrurnedloo unsteady on my feet, especially while standing.  Today my physical therapist explained that standing involves constant movement from the muscles in the lower legs.  Most of the TABs (temporarily able bodied) out there are probably not aware of how hard their bodies work to keep them upright.

Today I spent some time sitting on a large ball, practicing my balance in my upper body.  It is much harder than it looks.  Luckily I had my ever vigilant PT to help keep me from falling.

My feet are my largest problem area right now.  I have to watch them constantly  while walking, otherwise I tend to drag my toes.  I could easily trip over my own feet!

I have to admit it is getting better.

Do nothing 'til you hear from me

Friday, October 8, 2010

The topic of last Wednesday's Ala-non meeting was courage, as in courage to change, the name of one of the Ala-non daily devotional books. I know quite a bit about courage, or more exactly, the lack of courage; a few years ago, I would find myself gripped by fears about the uncertainty of the future. These episodes would cripple me, occupying my mind for hours. Going to meetings, reading the literature, and working with a sponsor helped me get through this difficult period. I learned several tools that helped me then and they are helping me now to deal with my CIDP.

The first tool is courage to let things go, to trust there are many problems that I’m not supposed to solve and that this is alright. I have to recognize that others have their Higher Power, who is leading them to discovery at their own pace, not mine.

Adrienne carried an unbearable burden while I was in the hospital and bedridden at home. Knowing she was doing all this hard work to help me was terrible. But I couldn't help her. Trying to do more than I was capable was not only a failure, but dangerous. I had to trust that she would see herself through this and we would both be alright.

The next tool is the courage to make mistakes. Trying something and failing was a sign of weakness and vulnerability. Therefore, it takes courage to try new things or things that I have failed at. If I stop trying new things because I am afraid of failing, I have stopped growing. I have had plenty of failures, but through God's grace, many of those failures have already turned into victories.

Writing is a good example of this; ever since I could write, I have taken great joy in using words on paper to express and communicate. I thought I was pretty good at it until it was explained to me that I wasn't as good as I thought. I could have worked to improve my skills, but instead I didn't write a thing for many years. I thought that if I couldn't be perfect, then I would be nothing.

I started writing in the hospital to pass time and help me process what was happening. I also hoped that people close to me would read it to get information about my condition. Publishing a couple of blog posts a month isn't going to make me a great writer, but it is making me a better writer.

Lastly, the courage to say I can't do it myself-I need help. Asking for help truly is a sign of strength.

While in the Drake Center, my roommate Steve and I were talking about how it felt to one day be healthy, then the next need so much help. “It's humbling,” he told me.

Humbling is right. I survived all sorts of things I never thought I would. But I didn't have to do it alone. God surrounded me with love and protection. To all the people who brought that to me, you were emissaries of God, carrying His message and doing His work for Him.

When faced with a situation where I would have responded by using unkind words, or tried to force my solution on others, or any other of my unsuccessful strategies, I pray to my Higher Power for guidance.

I seldom get a dramatic response; 99% of the time, I don't get any discernible response at all, so I do nothing. I keep my mouth shut and wait patiently for resolution to come from a different source, and it always comes.

When people want to talk about my recovery, I have to give credit where it is due and say, “God is good all the time.”

All the time, God is good.

Tuesday, October 12, 2010

Wednesday, September 29, 2010

It has been a while since I posted anything, so I am just going to pray, then ramble. “Let the words of my mouth, and the meditation of my heart, be acceptable in your sight, O LORD, my strength, and my redeemer.” Psalm 19:14

I am back in same day surgery this week. The beds aren't as comfortable, but the nurses are awesome. These are the same nurses that held hands and prayed with Adrienne and me last spring (The Best Show I Ever Saw) and helped get me into the hospital at UC last spring. Their fierce (and fearless) witness has been a comfort and inspiration to me.

I started writing to help myself process my illness (and also to inform others).I never expected that it would become so spiritual, but I couldn't imagine how hard it would be to go through this with out my Higher Power.

I don't know what my future holds, but I am not expecting a miraculous cure. The CIDP will probably be an increasing part of my life; there is no miraculous cure in my future. There have been miracles though and more to follow! Instead of taking away my burdens, He will see me through them.  

Literal baby steps

I worry that I don't have enough computers

Saturday, September 18 ^th, 2010

I survived last week's computer loss quite well. In fact, I ended up buying a new computer. It's a used Dell netbook that I bought from our neighbors. It came loaded with Windows XP, but I also installed Ubuntu’s Net Book Remix. Typing on the small keyboard is very difficult, but I love its portability. The 10 inch screen is fairly bright and clear, making watching video pleasurable. Which is great because I spend plenty of time watching movies in bed.

The main reason I’ve been watching so much video at night is I’ve decided to stop taking the Ambien to get to sleep. Sometimes I am up until 2 or 3, sometimes I am asleep by 9. I’m not sure why I quit taking the Ambien. Maybe I’m trying to feel like my old self again; the self who didn’t take sleeping pills. Or I’d just like watching movies in the middle of the night (One evening I watched a Barbra Streisand movie and The Exorcist.  There were several similarities.). Which is something my old self did anyway.

I’m feeling a lot calmer now too. The people around me are probably relieved to see that. In my effort to rejoin the ranks of the temporarily able-bodied (the TAB), I’m spending a lot less time in the wheelchair; I would rather sit in regular furniture.

I’m experimenting with locomotion in the vertical position, also known as walking. On our last date night, we left the wheelchair at home and I used my walker. It was tiring and I was in a lot of pain later, but it felt so good!

One of my biggest challenges is relearning how to move my feet. I can lift up my leg at the knee and move my hip forward then put my leg down, but I have to concentrate on placing my foot. Otherwise it just tends to flop and drag my toes along the ground. Not very sexy.

The other big challenge is keeping my balance while I walk. I can’t stay upright and unsupported for more than a few seconds. Adrienne said that at first she thought I looked like a toddler, then she realized it was more like Frankenstein's monster. For the first time, living in a small house has an advantage. As I careen about the house on my journey, being able to reach out to a nearby wall and steady myself is a great comfort.

These journeys represent my attempts to rejoin the TAB. It’s easy to get discouraged at how short the trips are and how quickly I get tired; just walking from the office to my bedroom was cause for a brief nap. But then I remember how long a journey it has actually been, and I feel a sense of pride in myself and gratitude to the Lord.

Down by the lazy river

Monday, August 8, 2010

Adrienne and I went to swimming tonight at the fitness center on Miami's campus.

What a blast. Miami University has thoughtfully provided a chair lift that is easy to get on and off and is operated by the passenger, so I could control my own decent and ascent. In chest deep water, my legs will bear my body weight. Plus I can really swim, hold on to the wall and kick or bicycle my feet.

We walked inside the rim of the pool, sometimes I held the wall, sometimes I held Adrienne, others I was independent. When we got to the end, we smooched and went back.

The last time I was in a pool was at The Drake Center. I cried with joy because I felt almost normal. The water counter-acted the gravity that pressed me down the rest of the time. When I called them, my knees raised my feet towards my chest just like they were supposed to do.

I changed the "Overheard" box on the upper right corner of the pager, please let me know if you have any you would like to share.

End of Summer, 2010

The Miami students are back to classes and hopefully we have seen the last of this summer’s “fry an egg on the sidewalk” heat. I’ve come very far since March; I watched spring turn to summer paralyzed in a hospital bed and now I am walking around the house with a walker!

My most vivid memories of the summer are of Mercedes standing by my side, clapping her hands and chanting “Go! Grandpa go!” while I shifted my weight from the chair on and off a transfer board. Now I make my transfers by standing up and moving my feet, then sitting. I couldn’t pick her up when she arrived, but before she left, we could play airplane.

I also remember that God has also surrounded me with a loving support group and family who carried us through these hard months.

The doctors and therapists who have aiding my recovery have all been to notch.

A large chunk of my family, some of whom I haven’t seen in years, made the trip to Oxford to visit us. My brother Bob and his wife Mary Carol came to visit last week, their two oldest sons were here the week before. My Sister Neli and her husband Nate also visited. And of course my Brother Jim, who was able to stay with me for nearly a week this summer, was a tremendous blessing. Plus there have been nieces and nephews, and friends from so long ago who have dropped by, called or written.

Then there are my new friends. People like Niki and Jeannie J. who gave their time to help Adrienne and me, the friends who helped get the house ready and all the people who are carrying us in prayer.

Friends like Steve and Duane, who gave us such amazing gifts to us that we will treasure for years. I have no idea how to respond to such generosity. My brother was moved to tears when he heard about the generosity.

Last week while doing my circuit around the park a stranger who appeared to know me quite intimately stopped me to talk. He appeared to know me pretty intimately, but I couldn't place him. It was my doctor, I discovered the next week.

It turns out that I haven't really lost all the weight I thought I did. When I was at the hospital on Wednesday, my weight was 239 pounds, at 25 pound increase from two weeks ago.

I have felt pretty distracted and withdrawn for the last week. Most difficult has been day-to-day maintenance tasks such as scheduling my rides to the hospital or ordering medications. Talking on the phone or trying to make plans about the future has been exhausting. I haven’t been to an Ala-non meeting in over two weeks because I just don’t want to talk to people now. That is also why I’ve been staying off of Facebook, e-mail, or writing my blog.

I spent a lot of time in my room, watching old horror and science fiction movies on YouTube and Hulu. I just can’t get enough of movies with titles like Astro Zombies or Battle between the Planets. Many of these movies were staples of my Friday nights and Saturday afternoons in front of the television. I hope someday to write more about these movies in an informed and eloquent style like this blog, devoted entirely to films of the 1960s. The author also writes a blog for Turner Classic Movies, which I’m sure is wonderful but I haven't been able to follow it since I got sick.

I believe it is the new medications I’ve been taking to help with my steroid rage. My memory of taking anti depressants is that they made me feel disassociated. I will admit that they’re helping, but the problem has not gone away. This week I started taking a third anti depressants/mood disorder drug. Hopefully that will help before I lash out at someone who will punch me in the nose, wheelchair or not.

Other than my reticence about contact, things have gone very well. I am continuing to improve at a miraculous rate. God has been very good to me by speeding my recovery. Today I got up from a chair in the living room and walked out to the mailbox and back. Take that, CIDP!

God loves me as I am, imperfect and incomplete. I know he has a plan for me, Adrienne, and Natasha and Mercedes. It is hard not to worry about them because they are so far away.

Old Lessons

Sunday, August 15, 2010

Today during his sermon, Pastor Logan asked us to think of someone who would had been a spiritual influence. I immediately thought of Paul, a neighbor from Norwalk with a son the same age as me. He would drive us to school in the mornings. More than once, when I came over, he would be sitting at the breakfast table, reading his Bible with this breakfast dishes scattered around him.

Paul was the first person I had ever seen, besides our church pastors, who sought to continue his relationship with God beyond church on Sunday morning. Paul and I never talked about our faith, but by doing his daily devotion, he had a profound effect on me.

Logan asked us to name some of these people. During the congregational prayer, those names were read back and we thanked God for their witness. We asked God to “ grant us Your mercy to live by the same strength.”

I am grateful to God for my health, my wealth, and the support of friends, family, and fellowship. I pray for knowledge of His will and the strength to carry it out.

I return to work

Friday, August 6, 2010

I went back to work yesterday. I didn't go back to work work, I went back to take part in a celebration.

My job was to teach computer classes in the senior center at the Mayerson Jewish Community Center and to coordinate a volunteer run telephone assurance program.

Both my programs are funded by a grant from the Mayerson Foundation. Once a year we would have a special luncheon to thank the Mayerson's for their generosity and to show what we had accomplished in the last year. Click on the picture below to see a Picasa web album from yesterday.

This was the first time I had been back since March 19, the day I went into the emergency room. It was also the first time many of these people have seen me since I got sick.

The senior adults and fellow staff members swarmed me, giving me hugs and kisses and tears of joy to see me again.

I was reluctant to let go of the people I was hugging. Being physically close to them was an intense reminder of how much comfort they are to me. They have been lifting me up with their prayers, well wishes, cards and letters, whatever they had to offer since I left.

Once again, I'm left speechless by the generosity of the people in my life.

It was a physically and emotionally exhausting day. It was a pointed reminder of how far I have come (and how I got here) and there is still a ways to go.

When I got home I went right to bed and stayed there until 10 o'clock today.

My First Steps

7/29/2010

Praise the Lord for what he has done for me. Click the link to see the video

My status has been upgraded from amateur to professional

July 17, 2010

This is from a post I wrote shortly after the 4th of July:

“…while waiting for the fireworks to start, I saw someone in a wheelchair come down the sidewalk and cross the street. I was awestruck by how graceful and independent he was. He came down with a group of friends who went off to the right while he went off to the left into a parking lot. Moments later he emerged from there and took off after his friends, across the street and down the hill. He moved as easily as I can say these words. So far my experience with using my chair outside has been anything but easy or graceful. I struggle to keep the wheelchair pointed in the direction I want to go and forget about going up any incline-it is too hard.”

This week I got my new, custom built chair. It’s awesome! The chair is designed to fit me perfectly. It is like a part of my body and is engineered to fully utilize the power in my upper torso. Going up and down Jacqueline Drive is like riding a bike, I coast, accelerate and brake smoothly.

I’m intoxicated by my newfound of mobility. I left the house Saturday morning and traveled on my own the half mile to our local McDonald’s restaurant for breakfast. Then I lingered over coffee and read the paper. On the way home I stopped at a drug store and bought a candy bar (a no-no, but I was intoxicated.).

After that, I ran into Alex, walking home from his mornings activities. He was amazed to hear where I had been. For the first time in a long time I felt like an adult, making my own decisions and traveling independently.

Before I got my new chair, traveling on the local sidewalks was extremely difficult if not impossible. This meant in order to exercise, someone would have to drive me to the local big box store where the floors were flat enough for me to roll across. Now I know I can just go out my front door and travel up and down the street.

Getting outdoor exercise is extremely important. If I don’t tire myself out during the day, I’m extremely irritable in the afternoon and evening. There the combination of pent up energy and frustration make a bad mix for my mood.

Exercise and mood are important to my attitude. At my best, I am a jerk. The side effects of Prednisone and Cellcept exacerbate that condition. I often have to explain that I am having “crazy thoughts” and should be left alone. There is a condition known as “Steroid Psychosis” and sometimes I feel so out of my head, I worry that I am developing it.

As I’ve recovered, I’ve noticed that I have started to become alienated from the world around me. It’s like an undeclared state of apartheid between the Bi-peds, those whose arms hands feet and legs work perfectly, and the disabled, who inhabit the lowest tier of society because they lack four, symmetrical working limbs.

The other day someone put something in my lap and I found myself yelling, “I am not a piece of furniture!” I was prepared to go on about how they shouldn’t assume I was their personal storage cart that they could load up with useful items and move from place to place at will, but I could tell by the look on the person’s face that I had already gone too far.

I’m completely horrified whenever someone grabs my chair and begins to pull and push me without asking my permission. It wouldn't be acceptable if I were standing up, but because I have wheels...

Lucky for me, the volunteers at the hospital have a good sense of humor.

It’s all good

Wednesday, June 16, 2010

There is really good news, like praise God for the miracle of modern science good news. The treatments are working. After the second or third day of IVIG treatment, and a week on steroids, Alex noticed that my strength was returning. I could pick up my tray table and move it off me. While transferring from the chair to the bed, legs moved. I am getting stronger every day. I just spent 20 minutes cleaning up the scraps of my lunch and putting the dishes into the dishwasher.

Here's a list of some of the things that have improved:

• Confidence with my transfers; I was never certain when my arms would give out and my body would pitch forward into space. Having confidence that I can support my upper body without having to worry about my elbows buckling makes getting from place to place a lot less scary. My legs have improved also.
  
• Feeding myself; I needed help getting the food into my mouth. Even with a special device over my fork, I couldn't hold it even with both hands.
  
• Wrist strength; I no longer hit myself in the face with my fist. I'm also better at picking things up and putting them back down.
  
• Getting dressed; I can change shirts by myself.
  
• Typing; I still rely heavily on voice recognition software for my phone and computer, but I've regained in the ability to push the keys.
  

Immediately after finishing my last IVIG treatment for the month of June, the hospital's free wheelchair accessible transportation took me to see my local physician. It was a very informative appointment. He was very helpful, taking great pains to answer our questions. For once Adrienne didn't have to position herself between the physician and the door to prevent him from leaving, a problem we often have with neurologists.

He upped my metformin, my oral diabetes medication. I am also doing daily blood tests

Starting tomorrow I'm going to begin taking Wellbutrin for depression and to quit smoking. The reason I decided to quit smoking now, or least once the Wellbutrin starts to take effect, if the IVIG does not work, my best hope will be to get into a clinical stem cell trial. Which I'm sure if I'm smoking I would automatically be disqualified from. Note to myself, is this an example of irony? I don't think so. I think it might hubris, with the consequences of my decision to smoke being greater and much quicker than I had expected them to be.

As soon as it arrives from a mail order pharmacy, I will begin taking Cellcept, an immunosuppressant. Yesterday I asked my physician if I should get my tattoo before I started taking this medication and he pointed out that my immune system has already been compromised by the steroids. No more tattoos for me.

My physician informed me that because I'm taking steroids, a surgeon would be reluctant to operate on me, any wounds will take longer to heal, and there is an increased risk of infection. I've already begun to fantasize about what fatal microbes I might be inheriting from every handshake or cough.

I still push against my own perceived fears; today the three of us took a trip to the mall and I was instantly overwhelmed. I was aware of how small the world my world had become. I felt like I was a very tiny person living in a world of magical giants. I was awestruck by the amazing things that they could do..

I used to enjoy roaming through the stores in a mall. It was a good stress relief for me. Going into a store on my own the first time was intimidating, a feeling that was exacerbated when I knocked over a pile of boxes. The hats I wanted to look at were out of my reach, but I was quickly surrounded by every available clerk in the shop. They helped me find the ones that fit me, but were reluctant to help me move my chair over to the mirror (the carpet was very thick). This became a pattern; the salespeople either pretended I wasn't there, or they mobbed me. Being ignored made me feel frustrated, but all the extra attention made me feel nervous and anxious.

The mall was a great opportunity for me to practice interacting with other people. I didn't realize how hard it had become for me to talk to a complete stranger, unless they're a medical professional. There was a giddy moment when I rolled away from my companions to check out the watch counter at a department store. Watches, I explained to the lady behind the counter, were like crystal meth to me and I was fixing to score. I had no intention of buying, but it was thrilling to put beautiful things on my arm and admire them. She practically threw a variety of beautiful watches at me.

I had forgotten how much I enjoyed looking good. I used to take pride in my personal appearance. Wearing a fashionable shirt and a clean pair of slacks gave me a sense of self satisfaction that I had grown used to and accepted as I've gotten older. I would admire my accoutrements and view them as signs of success and maturity. I gave all that up when I went back to the hospital in April. Since then, my wardrobe has consisted of shorts and T shirts.

While in the mall I faced another significant challenge; using a public restroom. Presently I am unable to do buttons and zippers. Therefore going to the bathroom requires a companion. Fortunately for me, Alex volunteered to help. He also gave me a quick Spanish lesson. He also noticed that there were special cutouts under the sinks to make them a wheelchair accessible. This was another first for me; I was able to wash my hands at a sink.

Some goals for the future:

• Buttons and zippers
  
• Sit up in bed
  
• Use my feet to move my wheelchair
  
• Turn my bedside lamp on and off
  
• …
  

My step daughter Natasha asked me to describe what my world is like. My world is very small. And what is big in my world, is tiny in hers. Despite the obstacles, I am grateful for the process I am going through because I hope to rejoin her in that big world of magic and wonder. The process of getting there will be a journey filled with miracles for me and I will praise God for each one.