Oct 202010
 

Mike and Beth outside Michael Talbart Advertising in San Diego.

My wife and I were photographed by my business partner, Tal Smith, before we closed Michael Talbart Advertising. Those who know me might recognize the changes Inclusion Body Myositis had made in my appearance.

The last two years of the 20th century also marked the end of my ability to function physically well enough to earn a living. Since my diagnosis in 1996, I had been getting along pretty well by using braces and forearm crutches. However in 1999, it became obvious that I needed to “graduate” to a scooter or wheelchair. I have always been of the philosophy that I should take advantage of any technology available, so I wound up with one of each – a Pride Legend Scooter and a Jazzy Wheelchair, both with elevating seats. I also purchased a van with a lift in the rear that would swing out and pick up my scooter and deposit it in the back. Then I would walk around to the front, hanging onto the van, and get into the driver seat. But as time went by, this process became more and more precarious, and I took some pretty bad falls in parking lots.

I also noticed that my advertising clients were evidencing discomfort when I would show up for meetings, as I was very limited in my mobility and they had to make considerable accommodations. The last straw was when a client had to lift me from my seat at lunch and then pick me up again when I fell in the restaurant parking lot (no martinis involved). I think that up until this point I had felt that my inclusion body myositis was just going to be a distraction and not a truly life-changing illness. But now I could see that it was going to continue to take away my ability to get around and to carry out the normal activities of daily living. I was also finding it more difficult to write, since my fingers were rapidly weakening. So, I reluctantly informed my business partner that we were going to need to close the business and that I was going to retire on disability.

My wife and I decided that we should travel as much as possible while I was still able. That turned out to be a very good decision since today I am unable to travel outside of San Diego County because I can’t be far from my custom bathroom and hospital bed. (Of course, if you’re going to be “stuck” somewhere, San Diego is a pretty nice place to be.)

Our travels introduced us to the difficulties facing those who rely on scooters or wheelchairs for mobility when they travel. We would reserve hotel rooms and request that they be handicap accessible only to learn that the room had been given to able-bodied people instead. If we complained, they would try to ship us off to another hotel in a much less convenient location simply to comply with the ADA regulations. More often than not, we would just rearrange the furniture in the non-accessible room and install a portable elevated toilet seat in the bathroom. Perhaps the worst offender was the Mandalay Bay in Las Vegas. First they refused to help us get our luggage from the front entrance to the lobby, causing me to break my foot when I tried to do it myself. Then they put us in a room for hearing impaired and said that that was the only kind of “handicap” room available in their hotel. We haven’t been back to Las Vegas since.

I’m happy to report that San Diego is blessed with scores of accessible hotels, restaurants, attractions and transportation. I’ll be reporting on many of these in the future.

Sep 072010
 

A small yellow hook with two quarters next to it.

My first DIY assistive device cost 50 cents.

Every good story needs a hook, and this is mine. It is a symbol of my strategy for coping with physical limits: take advantage of every tool available and if there isn’t one you like (or can afford) make one. IBM (Inclusion Body Myositis) attacks different muscle groups in different orders for each individual. For me, the fingers were affected early on. Drawers, car doors, even cartons of soft drinks became more and more frustrating to deal with. But even though my fingertips were useless, there was still some strength where the fingers joined the palm. My solution: a plant hook, a four inch length of wooden dowel and a little electrical tape. Total cost – less than fifty cents. Being able to open the produce drawer of our refrigerator – priceless. I have constructed dozens of these little tools. I have them lying around in every room of the house, plus the van, and one is in my belly bag. My support group made hundreds of them and sold them as a fund raiser at the national convention of The Myositis Association.