[Editor’s note: I had the opportunity to interview this wonderful woman recently. She also traveled from the NYC area to join NFOSD at our meeting with NIH (pictured at left) in mid-May 2013. Here is her story, as told beautifully in her own words. We thank May for the courage to share her story.]
Tell me a bit about yourself before your stoke?
I assisted students who were preparing to enter college, helping them select their Major and emphasizing the importance of starting and finishing school. I was known as having impeccable enunciation and pronunciation. I wrote, directed and performed in radio skits for a NY Radio Station and at one time was scheduled to be a TV spokesperson. My written communication skills including: grammar, spelling and punctuation were excellent. At one time I freelanced as a Publicist/Marketing Specialist for community theatre, small business and celebrities. I was published in an anthology and wrote for a couple of magazines, once upon a lifetime ago.
My daughter, who had moved out of state, came to NY during the week to take post-graduate courses at the college where I worked; I so enjoyed treating her to dinner during these visits. She worked Saturdays which meant I was on babysitting duty with my little first-born grand-daughter, Genny.
At least twice a week, I went to dinner with my colleagues in a restaurant that had live music. On Sundays, I was known to whip up a Soul Food Sunday Dinner that would be attended by more than a couple of guests. Life was good, good, good!
When did you have a stoke?
One morning, in February 2002, I woke up to my alarm and couldn’t move. I could not shut off the alarm clock. I could not get out of bed. I could not reach for the phone. It seems I drifted in and out of sleep; it took 24 hours before I could get out of bed. I slid out of bed, crawled to the bathroom and pulled myself up holding on to the vanity.
I thought to myself, these hours are killing me. I am too exhausted. I called my job and felt so guilty that I hadn’t called in the day before. I explained that I was ill and would go to the doctor. I called a cab and 2 hours later I was ready; I’d put on a shoe and then had to sit down and pause before I put on the other shoe. The doctor told me that I probably had the flu. I was unfamiliar to him and my slurred speech and slow, sluggish gait did not send any triggers to indicate to him that I had had a stroke. He gave me a prescription.
I went back to work and my colleagues kept saying something is wrong with you. I remember snapping at the receptionist and saying nothing is wrong with me. My friends went as far as to say you sound like you had a stroke; your speech is slurred. I paid them no attention. I was taught by my great-grandmother to keep going. Don’t act sick, don’t ask anybody for anything. So I guess I took her advice almost to my grave.
Can you describe what life was like adjusting to your new normal in the first year after your stoke?
My job provided me with six months of short-term disability. Within two weeks I had a coughing spell like the whooping cough and ended up in the hospital where they admitted me. I tried desperately to find out what happens to me. I ended up taking a multitude of tests and even more after I was discharged as I kept the attending doctor from the hospital as my new PCP. He told me that I probably had a TIA and that it doesn’t always show up in the CAT scan or MRI. I didn’t own it. I promptly forgot the acronym TIA. I was in complete denial.
I was let go from my job while I was on leave. I tried new jobs but would end up getting fired due to my issues: slurred speech, coughing, rubbing my arm due to the pain and my sluggishness. I no longer fit in. Once, my manager invited me to lunch. I wasn’t eating naturally and couldn’t handle discussing it.
I started noticing that my spelling and punctuation skills had waned. I found that embarrassing and I kept it to myself. I bought a new book on the mechanics of writing. The thing that upset me the most was everywhere I went, people would say, “Ha? What did you say?”
What chronic symptoms do you currently have?
I have a chronic pain on my left side down my arm and intermittently down my leg, migraines, aphasia, dysphagia, heart palpitations, arteriosclerotic retinopathy, which required 2 laser surgeries (to repair tears in my retina), one in 2006 on the right eye and then another in 2012 on the left eye.
But, my worst chronic condition is dysphagia. My chronic pain doesn’t stop me the way my swallowing issue does. I’m constantly clearing my throat because I can’t swallow properly. I cough and cough.
How have speech and swallowing disorders affected your work and social life?
I feel so lost sometimes. Now that a lot of my friends are retiring and going on cruises, I can’t go. A cruise vacation is a dine fest. I can’t just sit at a table three times a day and bond, while everyone is eating. How could I sit there and starve!
I won’t go out to dinner with my friends anymore. I can’t sit there with people staring; how unfair of me to put onlookers through that. I feel embarrassed. I hide in the house. I feel like people are staring at me, even when I hold a napkin in front of face when my family comes to take me out. I feel that people are making fun of me. I don’t cook family meals as my daughter doesn’t come to NY anymore for school or work. I don’t cook for my friends anymore either.
Let me be clear about the dining out thing; it is serious. Believe me, if you accidentally lower that napkin while you are eating or don’t hold it to cover the side of your mouth, some body’s eyes will rest on your crooked mouth trying – and you may very well receive a smirk or a laugh out loud.
My dysphagia has lead to depression and isolation. That means, even without the stroke or any other health issues – this disorder, in and of itself, is debilitating.
Even if I am invited to a social event at someone’s house, I have to make mention of my disorder and ask to dine separately from everyone else. Not many people are familiar with dysphagia. My little ‘make mention’ of my disorder becomes a difficult conundrum. I am almost always very uncomfortable. It is an awkward topic to explain. And the question of the hour is mostly angst-ridden: “May I sit down somewhere quiet and alone to eat?” The thought of asking this question becomes a point of anxiety. Someone may say, “OK.” And then someone else may say, “No. Everyone is eating in the same room,” or a well-meaning person will say, “Don’t worry. No one will be looking at you”.
Many people have no idea what I am talking about when I say I have dysphagia. Then I have to explain it. They are either trying to understand, or don’t get it, or look at you like their antennas went up. Somehow you know they are not inviting you back. Their follow-up question of, “What is Dysphagia?” can lead you right down a path of shame. I feel degraded trying to explain it. And crushed, when I see the look of rejection in their eyes. They don’t understand how sad I am at how non-gracious looking my dining experience is. So the thought of going out becomes an anxiety-ridden experience. I feel like, I can’t eat in a public place, so why should I go? Why would I, or anyone like me, want to put themselves in this position?
I have cried too many times over this disorder. When I go out, I immediately want to go home and stay inside. People who have dysphagia isolate themselves. So that’s me. I want to be social, but I stay in and hide most of the time.
My daughter, son-in-law, and grand-children take me out to a restaurant. I hold a napkin in front of my face as I still have my pride. My family is very important. But I know I also need a social component outside of my family. In the beginning, my friends would call and I’d be too fatigued to talk on the phone. The others disappeared. Some die, some move away, and some are active sixty-year olds. I’ve lost a lot of friends.
The awareness message should be that this can happen to anyone or one of their loved ones, at any time from many different diseases or illnesses.
Dysphagia deserves more attention and more alternative treatments: creative therapies, medical massage, acupuncture and music therapy. I have begun singing in the last couple of years, and believe me, I sing better than I speak. People with dysphagia need a social group that gets together once a week to go to the theatre, movies, music events and participate in other recreational activities. Unfortunately, when illness is tied to depression, pills are the first recommendation. I believe in cognitive therapy and a holistic approach. I do have an idea of what I need – and it’s not based on keeping the status quo, but on moving forward.
I feel like I am sitting on the wayside of life, just watching it go by.
What mechanisms do you use to cope with the effects of your disorders?
I walk with a cane as I often lose my balance. I fell down three times in two weeks without using my cane – so I know better now. It’s obvious from a distance away that I am disabled. I also use a nebulizer several times a day to clear my throat because I have trouble swallowing.
I take Access-A-Ride (a NYC-area offering for the disabled). Thank God for it! I used to take public transportation, but the bus drivers rarely lowered the steps. Even when they did, I grab onto the rail bars for dear life to help pull myself up; with a cane in one hand, it’s quite difficult. When I fell asleep on the mass transit bus, OMG, my poor mouth would relax. Then it would open and that enlarged tongue would put on quite the show. I have woken up on the bus with people pointing, laughing and staring. This was a horrid, horrid experience.
At night I fall asleep easily, but I wake up several times coughing. I literally sit up all night as I can’t sleep in a supine position without the fear of choking.
My eyes are very sensitive to light, so much so that I wear sunglasses inside. Sometimes when someone is speaking or I am listening to the TV a word drops out. I can’t hear it – then my comprehension goes downhill.
What’s important to you now?
My family is so important to me. I embrace the conversations my daughter and I have on the phone. If she calls and I miss the call, I am so lost. I don’t see them often, but there is hope that I will see them more often, my nephew has moved to the area where my daughter lives and he still works in NY. I am looking forward to traveling with him to see these very important people: Shawn, Tiffanie, Genesis and Zilah, my little family. My music is a big part of my life and I have an eclectic taste. I used to sing; Jazz Standards, Gospel and Opera. I love the music of my heyday, Latin, Classic Soul, Psychedelic, R&B, Rock, Beach and Pop and the music of my parents’ generation, Swing, Blues, and Big Band. I think I could go on and on. I also love gardening in pots on my terrace. I love to cook, although I should purée more.
I joined Facebook three years ago. After seeing friends just going about living a full life, I shut my page down. I finally went back a couple of months ago and think I’ve accepted the fact that everyone has their own life and it does not have to include me. I’m actually a little addicted to Facebook… Thanks for TV and Facebook! They help to while away the time. I remember when I was ashamed to say I watch so much TV.
You participated with our Foundation in a meeting with NIH recently. Can you describe your experience at that meeting?
Actually, I almost didn’t make it. I know I tire easily and formed a mantra which I said for several days, a few times a day: “You’ll sleep on the train – you’ll sleep on the train – you’ll sleep on the train!” I made it to the meeting.
When I was called to speak I realized I had to clear up something, so I told them: I now have a nickname, it’s May. I told them, due to my slurred speech from my stroke, it’s easier to say May than to say, Roberta. I went on to tell my story.
One of the reasons I made the effort to participate in this meeting was my chance to raise dysphagia awareness, the need for support and social groups and to let everyone know dysphagia is a very isolating, humiliating and embarrassing condition.
I remember at the end of my talk, I wanted to give them a word of caution in their own personal lives. I told them it can strike anywhere, at any time and if you have an Aunt, Grandmother, Parent who does not go outside and says, “Oh, you guys go on, have fun” or “I did all of that, when I was younger” or states, “I’m too old” or “I’m too tired to go with you guys” or gives any excuse, if they have dysphagia, they may very well want to go. They are just embarrassed to tell you why they are staying in. Please reach out to them and get them out of the house and surround them with support.
I walked away feeling that the overall presentation went very well. I met another panelist, Greg Crawley, whose little boy has dysphagia. He and Ed Steger, the catalyst that brought us all together, gave compelling thoughts on problems people face with Dysphagia.
Baldwin M. Wong, of NIH, his staff and colleagues were very attentive, and gave us productive feedback. They thanked us for giving them more perspective on dysphagia, and agreed that dysphagia is not well-noted or understood. I realized, I was at the right place, at the right time.
What advice do you have for others that may be struggling with disorders similar to your own?
Keep on keeping on. When being diagnosed, change doctors if they’re disrespectful: not listening to you, rude, rushing, not washing their hands, dropping utensils and picking them up and continuing without disinfecting or replacing them, or if you don’t feel comfortable with the doctor. Insurance companies need to know that some of these doctors are very rude – too many doctors are insensitive and need better patient relationship skills. With the onslaught of shows like “The Doctors” and “Dr. Oz” it’s time for a change.
If you can’t get a diagnosis – do not give up! Keep trying. Find alternative healing therapies, including creative modalities, such as art, crafts, writing and music. I started going to a singing class last year. It actually helped my speech.
Reach out to old friends. Join clubs, groups, and organizations. Try planning your own get-together. Invite a few disabled new friends to go to church or to pray together. I’m interested in creating a music listening group. I still have my fabulous eclectic record collection – from Sinatra, to Joplin, to Motown to Classic Soul, to Disco, to House Music to Dionne Warwick singing Alfie. It’s the covers that are the reason I don’t throw out my albums. If you meet 100 people and two become acquaintances, then that’s a blessing.
In the meantime, I am promising myself that I will get out of the house more—even if I have to go by myself. But when I do go out, rest assured I will eat like a pig before I go; and make sure I don’t stay out too long, as I will get hungry; and when I get home, I will rush back in to eat again. I won’t be eating in public!
Above all, find a Spiritual outlet. It will help you to see things from a more positive perspective. My fervent wish is that dysphagia will be accepted as a new normal, in this country. I hope people will understand the disorder and respect a person with wishes to dine alone. I want sensitivity in this world, more compassion, not just for people with dysphagia, but anyone suffering with a disability.