There was a time before Skeeter, before a rollator/walker or even trekking poles...
In retrospect, I think I was trying to convince myself that I wasn't noticeably disabled. Although I'm somewhat of a denial advocate, this attitude often got me in more trouble than it benefited me. I actually thought if I acted normally, no one would think something was amiss. They did. People who knew me well, knew right away something was up, but casual acquaintances and strangers just thought I was impaired for some reason. Pick your impairment of choice--drugs (nope), MS/stroke (nope), dementia (not yet), alcohol (probably). But, that just wouldn't do. Pretending that my struggles were only internal and not obvious, wasn't compatible with preserving my self-image.
In the middle of a nice day, I decided to drive down to a local bike shop to buy my husband a birthday gift. I did and drove home. At the time, I had a dog, Lucy, who felt her "job" was to frighten any potential intruder at the front door with her fearsome bark. Never successfully able to train her that not everyone was a threat, I had to close her off in the family room in order to answer the door(setting the stage, here...).
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Lucy, the barking menace |
About twenty minutes after getting home, three Lake Oswego policemen (must have been a slow day at the department) were at my door because the bike shop had reported me for suspected drunk driving. They were concerned about my ataxic gait and slurred speech. It was time to face up to what Ataxia (even early stages) looked like to others.
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Not quite this bad, but close. |
I was both embarrassed and mad, but part of me was grudgingly admiring of the people at the bike shop. They didn't know me and could only observe my symptoms and be concerned for public safety. Not everyone has the courage to turn in someone they believe might be intoxicated. But, my wicked witch side won out, so I was mostly indignant and mad.
Stern faced Police: Are you Mrs. Schuman and were you just at the Lake Oswego bike shop? Can we talk to you?
I thought to myself, "Stay calm Tam, take a deep breathe, don't cry and definitely don't let them see you sweat. You know what this is about and you didn't do anything wrong." Still, when three uniformed cops come to your house, you feel like a criminal.
Rattled Tammy: Yes I am, yes I was, and yes you can. Lucy was going berserk barking and nothing I could do would convince her that I was not going to be shot by intruders.
Cautious Police: Could you put the dog away? I put her in the family room, closed the pocket door, and returned. Have you been drinking today? It was around noon and although I look forward to wine, we're talking evening!
Courteous Tammy: I know what this is about and although I may have appeared drunk at the bike shop, I haven't had anything to drink. I have a type of Ataxia.
I assumed that my explanation would suffice and was shocked when they didn't accept it at face value and leave.
Persistent Police: We need to administer some field sobriety tests.
Now, I watch TV enough to know the tests are probably walking a straight line (can't do that), walking heel and toe (definitely can't do that), stretching arms out to side and bringing index finger to nose (can't dependably do that), and standing on one leg (are you kidding me?). Falling over would be a dead giveaway of test failure.
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Heel toe? Gee, I don't think so... |
A brilliant thought occurred to me after I informed them I would fail any sobriety tests.
Helpful Tammy: You could call my neurologist or the Movement Disorders Clinic or I could take a breathalyzer test. Yes, I did know they couldn't legally require me to, but I also knew a breathalyzer test would be negative and I was starting to sweat.
Uncooperative Police: We can't do that. Could you put your hands out to your side and alternately touch your nose?
Angry Tammy: Fine! Consider yourselves warned...
Since this is a common neurological assessment exam, I was pretty familiar with it. I obviously did a passable job, because the police seemed satisfied and left, their standards being much lower than my neurologist's. I had managed to stab myself in the eye only once. But I didn't confess to some random crime I hadn't committed and I didn't cry.
At a hastily made appointment later that week, my neurologist gave me a letter verifying that I indeed do have a Spinocerebellar Ataxia. I made several copies of the letter–one for each car, one for me, my husband, the children, the Lake Oswego police.
My daughter-in-law helped me design a "business" card with my picture and contact information on one side, a brief explanation of SCA (and spelling) on the other. I keep them on me, on Skeeter and hand them out to everyone, whether they want one or not; if they trash it, fine. In the event I'm found unconcious on the side of the road, people know who I am, what I look like, what I do and don't have and while I may appear impaired, I'm not (at least, not necessarily). That little card saves me the need to explain SCA for the thousandth time. I found informing people spares them from asking. Although Skeeter and my assorted assistive devices help a lot now simply by being indicative of a person with disabilities, retailers are relieved to have an explanation. Only a few will cautiously ask, but everyone wonders in silence.
