So alike, so far apart: sisters in CMT.
As soon as Iveta came through the door, I knew we were kindred souls. I noticed the unsteady walk right away.
The crutch on her left side told me there was likely a balance problem so common with people who have CMT. She smiled and her huge eyes seemed to be asking are you like me, are we the same, how will you react to me, will we be able to talk?
Immediately I knew there was so much in common between us. One look at her hands and I knew she had to learn to cope the same way I do.
A little about my guest from afar: Iveta (pronounced Eveta,) Leipa, 45, is from Liepaja in Latvia. Leipaja is on the west coast of the country very near the Baltic Sea.
When Iveta was born, her father, who had problems with his hands and feet, noticed that there was something wrong. Her feet weren’t right. There were similarities between his feet and hers. Her father’s maternal cousins also have CMT, both male and female, but no one knew what it was.
At 10 months, Iveta began walking and did a lot of tripping and falling. She simply kept going. Her parents sent her to a regular school and for part of her elementary school experience she was teased terribly due to the way she walked and her apparent clumsiness. “They made fun of
everything I did. Even my eyes were too big,” she said through her friend and interpreter, Agra Vagners, a special education teacher from Toronto.
At 33, Iveta went to university as a mature student, studying the Latvian language. She graduated after seven and a half years with her master’s degree and a specialty in editing.
She told me she has always worked and she has take on jobs in offices doing accounting, dispatch, for the local phone company, in statistics and on a computer.
I had also known that she was a poet from our previous talks on e-mail and I asked her how that came about. She told me that all of her relatives had said that ever since she first opened her mouth to speak, she spoke in symbols and rhymes. She’s been putting words to paper since she could write and has kept her work from age 14. She’s been published in the local press and across Latvia since 1993 and does “read- alouds” and poetry for children’s workshops.
Does her poetry talk about her life with CMT? Not directly, she said, but there is a lot in it about feelings and emotions. Several of her poems were translated into English for a muscular dystrophy event and the words have become lyrics for songs.
I had to keep remembering that Iveta does not speak or understand much English but thanks to our mutual CMT bond and Agra’s excellent understanding and ability to translate both English and Latvian, we nattered on for almost three hours.
The first thing on the agenda was the obvious: our hands and feet.
We both could see that our hands were alike. Our fingers are curled and clawed, unable to open fully and partial paralyzed and our feet either fully or partially paralyzed. We have both had operations on our ankles and both have had toes fused so they wouldn’t curl under. Walking on curled toes is extremely painful.
When I took off my boot, I showed Iveta the skate hooks on it that allows me to do and undo them very quickly and passed the boot to her to show her how light it is. Custom-made boots don’t have to be heavy, clunky things. When the right boot maker works for you, he can use fiberglass, cork and thin leather to build what you need.
We discussed how we managed. Iveta can still move her thumbs which makes daily functioning a bit easier for her. My thumbs are paralyzed and Iveta said that was likely something in the future for her. She has had tendon releases to uncurl her fingers so she can grasp the steering wheel of her car and drive. My fingers open with a shake or help from the other hand. My left hand fingers are more open than my right that has folded because I use it for my quad grip on my steering wheel. My right hand is great for driving but not particularly good for much else. I use hand EZ Grip hand controls to drive. Love ’em.
Iveta mentioned that she has had the button on her automatic transmission shift disengaged so she didn’t have to push it in with her thumb every time she put the car in drive or park. I didn‘t know that could be done. She also said she still drives with her feet as she feels confident that she can get her foot from the gas to the brake fast enough to avoid an accident. She has an extra wide brake pedal so she can’t miss it.
I also gave my two visitors a tour through our home. I designed the house back in 1988 when I could still stand and walk a little but, now that I can no longer walk, it has turned out to be fine for driving a scooter in as well.
In every room there were questions. What kind of cutlery do I use? I showed her my lightweight coin silver antique spoons and the little tool normally used to spread frosting on a cake that I use for taking eggs out of the frying pan. A regular lifter is far too heavy for me.
What was that on the wall over the sink? It was my wall mounted Swing-Away can opened. Iveta has a counter top can opener that her father has adapted so it doesn’t move around as she uses it.
In my bedroom, we also discussed the light, plastic urinal I use at night so I don’t have to go into the bathroom and wake up my husband. As it fills, the urinal gets heavier, so I’ve adapted it with a long strong cord that goes through the urinal handle and around my neck. With the cord holding it, I can use both hands to hold the urinal and not worry about dropping it.
In the bathroom, we talked about the loop of binding tape I have sewn into my slacks that goes over my head to help me pull up my slacks when I get up off the toilet. If my slacks fall down around my ankles, I can’t lean over to pull them up. The tape keeps the slacks around knee height and I stick a finger through a belt loop and can pull them up.
When Iveta asked me through Agra how I wiped my bottom, I thought Agra would sink to the floor. You don’t often ask a comparative stranger how they take care of intimate chores but when you have CMT and very weak hands, wiping your behind can be a real problem. I understood her question and how important it is to both of us.
No one wants to lose their independence and losing the ability to perform basic hygienic tasks can be devastating. I showed her how I am able to hold the toilet paper with my left forefinger and thumb running the paper along my thumb and using part of the heel of my hand to do what needs to be done. I also thought to myself as I did, how much I hope I never lose my ability to do that.
We discussed hand-held toilet paper holders and the Japanese made TOTO toilet that washes and dries you, but neither is as a good as your own hand. Being able to feel what you are doing and where you are doing it makes a big difference.
We laughed over the fact that Iveta has jump rings one everything: her purse, her wallet, everything. I showed her the ring on my pants zipper and I knew that everything I own with a zipper also has a jump ring on it. If we can’t grasp something between our forefinger and thumb, we can slip a finger through a jump ring and pull. I also use an old-fashioned buttonhook to do up buttons but ever year the number of garments I’ve bought with buttons on them has decreased to almost nothing.
When Iveta was diagnosed at age 20, it was the first time the rest of her family had heard of the disease, even though many of them had it. This happens with many families. CMT is a common, inherited progressively debilitating neuromuscular disorder. It is estimated that one in 2500 people are born with it. That’s just as prevalent as multiple sclerosis. Pretty well everyone has heard of MS, almost no one has heard of CMT.
Three hours went quickly, we took more pictures, and then it was time to part. I was getting very tired. Talking does me in because my diaphragm is partly paralyzed. Excitement and emotion mixed with constant talk only adds to the fatigue. I hate that this happens because I’d like to go like the Energizer bunny but at 68, I have to take into consideration my limitations or I’ll get weaker and weaker and someday I won’t be able to talk. I know whereof I speak. For two and a half years in the early 90s, I could barely get a word out. My left vocal cord wouldn’t work and my voice was a double, scratchy mess. I had an Ishiki laryngoplasty done where a small silicone wedge is put against the paralyzed cord to push it against the working one. You think blowing air through vocal cords that don’t touch isn’t tiring? I hope you never have to find out.
Visiting with Iveta made me look at my own CMT. I don’t often do that. I just get on with it. I don’t worry about what people think about the fact that I can’t walk and use a scooter or that my hands aren’t normal. I’ve come to grips with my CMT. It’s part of me. You want me? You get my CMT.
I’ll think of Iveta climbing up to her fourth floor one-room apartment in Latvia and rejoice for her when she gives a poetry reading in front of her admirers. I wish her love and laughter and all the happiness in the world.
Whether or not we can understand each other’s language doesn’t matter.
Iveta and I will always be friend in CMT. We’ll e-mail each other from time to time but most of all we’ll remember the hugs that came so easily – one sister with CMT to another.
Filed under: Uncategorized | Tagged: Agra Vagners, Charcot-Marie-Tooth disease, CMT, crutch, custom-made boots, EZ Grip hand controls, fused toes, independence, Ishiki laryngoplasty, Ivena Leipa, Latvia, poet, progressive deterioration, skate hooks, Swing-away can opener, Tele-Stik, urinal | 6 Comments »