I had a stroke on May 20. Ironically, it came the same week we had scheduled a dinner to bring together PWD community leaders and corporate leaders to discuss why there isn’t more being done to employ people with disabilities, who have the highest unemployment rate of any college-educated diversity sector. I missed the dinner; I was in the hospital, paralyzed on my left side.
I’m 54 years old and have none of the precedent conditions to a strokemy blood pressure is fine, my cholesterol is OK, I don’t smoke and I don’t drink to excess. I went to the emergency room at 1:30 in the morning because I had trouble walking. Unfortunately, I was not diagnosed with a stroke until I was well out of the window for tPA (tissue plasminogen activator) treatment. These are all things I learned after the fact. You may want to take a moment now and look up stroke symptoms and most importantly know where the stroke and heart center hospitals are in your local area. The difference can mean life or death.
Although my cognition, speech and vision are fine, I lost the use of my left arm and left leg. I am left-handed. With the help of the truly beautiful people of JFK Medical Center in Edison, N.J., I’ve regained the ability to walk, I no longer use a wheelchair, and my left arm is starting to come back. The prognosis for recovery is very good. Here’s what I’ve learned:
I’m very glad I invested in the PWD community before I became a member of ithaving friends you can call on is instrumental in recovery. I was almost immediately visited by Jim Sinocchi, a three-plus-decade IBM veteran (IBM is No. 23 in the 2014 Fair360, formerly DiversityInc Top 50 and one of the Top 10 Companies for People With Disabilities), and his beautiful wife. Jim, who is a quadriplegic, had the best comment at our Dining for a Difference dinner. When asked what the proper nomenclature is for people with disabilities (handicapped, disabled, people with disabilities, disabled people, etc.), Jim with his typical clarity said, “Just call me Jim.” When Jim and Maggie visited me in the hospital, they gave me some straight-shooting advice, but most of all their physical presence. A husband and wife who have lived a full life and are now grandparents bore honest witness to the fact that I was still me and I would move forward.
John Kemp, President & CEO of The Viscardi Center, which runs a school that educates children with disabilities so profound that they cannot be in mainstream public education, also visited me in the hospital. John was born with no arms and no legs, but his parents made sure he was also born with no concept of limitations. Seeing my friends, with whom I’ve been working on PWD issues for many years, helped me maintain a positive and upbeat attitude. Plus, there are no two more manly men than Jim and John.
You have to know somebody to get the best medical care. It is a crying shame that it comes down to this, but the average person must have the luck of drawing an inside straight to get decent healthcare. In my opinion, the first hospital I went to provided grossly incompetent medical care. But because I have highly respected friends in the medical industry, I was able to transfer to New York-Presbyterian Hospital, which is an outstanding hospital, and be treated by one of the best neurologists in the United States. With their advice, I moved to the JFK Johnson Rehabilitation Institute in Edison, where I stayed for a month in their acute inpatient rehab. JFK Rehab is a truly special place: Every doctor, every nurse, every therapist, every nurse’s assistanteven the young woman who cleaned my roomhad abundant empathy and outstanding professional and interpersonal skills. It is also a facility that thinks of the things that may seem small to an outsider but, I can tell you, made all the difference in the world. As soon as I was able to get into a wheelchair I was able to go outside, because the facility provides patients with a nice grassy area and picnic tables. My wife and girls were able to visit me, we were able to eat a nice picnic lunch outside, and they were even able to bring the dog (who was happy to see me, but afraid of the wheelchair).
It’s nice to have people who care about you. I received emails from close to 150 of my corporate counterparts and another 20 or so CEOs. One of my personal friends got a hold of me early on and told me something that really stuck with me. He said, “A lot of people are going to be watching how you handle this.” I took it as a challenge to make the best of my situation and to help the people around me make the best of theirs. It also helped me to count my blessings rather than dwell on what happened to me. There were people in the rehab center who could not speak anymore, whose cognition was scrambled, and who had more profound medical problems than I did. My physical therapist pointed out to me that the worst-off person in the ward was actually very lucky, because many people who have a stroke never make it to the hospital. The day he told me that, I passed by a room with an iron lung in it. I had no idea they still use those things. I am indeed a very fortunate man.
Unfortunately, my physicians have not yet found the cause of the stroke. I’ll be on blood thinners and cholesterol medicine for the rest of my life. We shall see how much the physical therapy ends up restoring function on my left side. So far, so good. Progress is slow. Recently, my occupational therapist got all excited when my left thumb moved a quarter inch. I shrugged, but she explained how important thumb movement is. Cool.
Because I have a phenomenal team, our business is doing wonderfully and I have been able to take the summer off to focus on my therapy. I intend to return to work in September, but I will not travel nearly as extensively as I have done for the past 10 years. I refuse to navigate the slovenly maintained Newark airport until my left arm works.
To accommodate our business, we’re moving our office across town to a larger building. We will have the latest videoconferencing equipment and plenty of meeting space for those who want to come visit us. I will emcee our two events in October and hope to see you there.
