My Trip to NIH to Spread Awareness About Dysphagia
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Did you know?
June is Dysphagia Awareness Month
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My Trip to NIH to Spread Awareness About Dysphagia
By May
After recently, fighting off another recent set-back with my health, I was again at a place where I needed to find a compassionate and considerate health care professional and people and/or patients who had a clear understanding of what I was going through. So there I was attempting to find a support group for Dysphagia, (this is a disorder that makes it difficult to chew and swallow and is a by-product of many acute and chronic Illnesses and diseases (including Cancer, MS, TBI, but not limited to; and in my case a Stroke, that I suffered in 2002). I had made several futile attempts in the past on the internet doing research to find a safe space, place, or group for people suffering with Dysphagia. I found information, but not actual people. I guess to tell the truth, I was reaching out for help. Now mind you, I’ve been looking for a support group for several years.
I found a national group and emailed them. To my surprise they emailed me back. And I ended up speaking to the president, Ed Steger of the National Foundation of Swallowing Disorders (NFOSD). It turned out, we had similar stories with different circumstances. He did not have a stroke, but he is a Head and Neck Cancer Survivor. His group was not in NY but in Virginia. But before our illnesses respectively, we both had, had careers and loved our work. Talking was a big factor, social acceptance and dining for fun and work were key components in our lives. Since the dysphagia, my lifestyle has severely been short-circuited. He too has had a tremendous change in his regime and daily activities. The distance of geography and the difference in disease catalyst were of no consequence to the conversation. It was the adverse effects of Dysphagia that we shared that mattered--be they negative or unwanted. There is something to say about talking to someone who shares your story of disability. There is a huge sense of relief, of knowing you’re not alone.
Well, as the conversation progressed, I was told that he had a group meeting soon to bring awareness to Dysphagia. I was asked if I would participate and tell my story on, “How Dysphagia Has Affected Me”. The discussion was held at the largest agency and source for medical research in the world, the National Institute of Health (NIH), where they make important discoveries that improve health and save lives under the umbrella of the U.S. Department of Health and Human Services. Thanks in part to NIH-funded medical research, American’s today are living longer and healthier. All I know is he said, I could take Amtrak to Union Square Station in Washington, DC.
I promptly said, yes. Nothing mattered, distance did not come into play, as I realized I could talk on behalf of people with Dysphagia, and I had a lot to say. Right then, I knew everything that I had been though had a meaning and had led me to this day. I also starting feeling like I was fulfilling a purpose. This is what God wanted me to do, and I started thinking about what I would say. One part of me even felt like the old girl going out to work on the job, getting up in the morning, and getting dressed to go to work. I started recalling the trainings, I used to go too annually for my career had sent me to. I felt good. I was excited for my life.
Then it hit me, this was going to be a long dragged out 3-hour ride. Reality was reminding me, “You are not that old girl. You are an old woman who may or not have energy from moment to moment. Sometimes I walk so slow and I tire easily. How could I go on this trip when I take 2 naps a day in order to function? “Oh my God, what have I gotten myself into?” I thought. ‘You will be exhausted. You can’t do this’. Here you go again. You got excited, and without thinking it through, you were off and running without one iota of hesitation. Yes, there I was again, I was off on an adventure. You’re always getting yourself into something, I thought to myself. Just always getting excited and ready to go and in some sort of hysteria. I now was second guessing myself and debating. For a number of days, I anguished over the length of the train ride.
Then I reminded myself to pray. I know that prayer will allow one to open up the mind and the heart and be able to listen for a revelation. After all the bible lessons I have had throughout my life, I asked myself: Isn’t God everywhere? Should I act as if I don’t believe, when I encourage others to believe? Will I allow God to figure it out? Or am I all in the details? Let go and let God. Let God in and let go of ego. I listened to Tony Robbins cassettes. I listened to church TV (several programs). I listened to my music from back in the day. I sat up. I did my breathing exercises. I formed a mantra and said it 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!”
This was a trip I had promised to do and I wasn’t going back on my word. This was my chance to talk about something I had first-hand knowledge about. This dysphagia had taken me to hell and back. My dysphagia is my cross to bear and dysphagia is something most people I encounter don’t know much about, if anything at all. Dysphagia has taken the social life away from a few friends of mine and new people I have met who also suffer with it. Dysphagia finally was going to get some of my fight, some of my passion. Too many times I have dealt with rude situations because of Dysphagia’s insidious side. I decided to face my opponent.
So there I was, on a task from a higher source again, to do something to help a cause. And after all, I am blessed to see another day. I can walk. I am not paralyzed. There is life in me and a compelling nerve inside of me--jolts me, forcing me to go write about disability or go seek out disabled elders who need companionship, (so many like me live alone and they do not want to move into a senior resident or God forbid a nursing home). They seem happy to discuss their barriers that came along with their respective health issues. That is when you can get them to agree to meet. But the fact is, I am either researching, writing or contacting someone who may need an ear or a voice. So in essence, I have been preparing myself for this day.
It is my duty, now that I have a platform, to go do the work. That’s when I got it. It’s the work. It’s always hard to do the work. The pain, the suffering, the grief is hard to deal with. There is always an excuse not to do the work. There is always a reason to stop. Not this time. I would go. And that’s that!
Speaking to the NIH Panel
It was May 12, 2013 and I was there: live and in my own living wonderment, full of something to say, a little bit nervous, but more determined than anything, to speak my truth about this thing that has me depressed, anxious, stressed and humiliated. 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. It’s easier to say May than to say, Roberta, due to my slurred speech, from a Stroke in 2002. It must have happened in my sleep, as I heard the alarm go off, to wake me up to go to work, but I could not reach it or get out of bed.
I woke up 24 hours later, literally crawled to the bathroom and pulled myself up off the floor by holding on to the vanity. It took 2 hours to get dressed. I figured I was exhausted from working too many hours. I went to the nearest doctor that I could find in my HMO. I had never seen this doctor before. He said, I probably had the flu. After many years of no diagnosis; along with my denial to say anything was wrong with me, I went along having trouble speaking, in chronic pain and having dysphagia.
So, I am a Stroke Survivor. I have Aphasia and Dysphagia. Prior to the Stroke, I worked as a College Counselor, speaking to parents and prospective students about their college aspirations. I was the counselor known as the most caring and kind-hearted. I gave extra time to prospective student when I interviewed them (to make sure students were solidly prepared to complete their college education). I knew in my heart, if you rushed through the process, the student would not have the trust, or feel they had support, which could lead to a lack of confidence when at times when college life got hard—and they may just drop out. “You take too much time, with the students”, my bosses would scold.
But the parents loved me, because they knew, I would make sure their kids graduated. I worked a 10-hour day. I also did volunteer work, chaired fundraisers, wrote and directed the Christmas play for church, sang gospel, jazz standards, arias and opera. I was called upon to micro-manage my team at work. I mentored children and teens through the years. I also once worked as a publicist in entertainment. Speaking, handling the microphone and having breakfast-lunch-dinner meetings was par for the course. I went from “Ms. Very Busy-Independent” to a now, “Ms. Very Slow and Tired Lady”, in chronic pain, (my left side mostly, from migraine to foot) who walks with a cane for balance issues. I cough a lot and use a nebulizer to clear my throat, several times a day. On top of that, even today without the income or prestige, I am very prideful, (I really hate to ask anyone for anything).
This is how dysphagia affects me: Well, basically, the condition known as Dysphagia is a debilitating disorder in more ways than one: Besides the obvious, chewing and swallowing issues, well: I can’t go out in a public place and comfortably sit down and dine. One of the reasons why I came here to do this today, is to let everyone know Dysphagia is a very humiliating and embarrassing condition. My frenemy, Dysphagia, can lead to depression and isolation. That means, even without the Stroke or any other health issues- this is debilitating.
Even if I am invited to a social event at someone’s house, I have to make mention of my disorder and then ask to dine separately from everyone else. And believe me, everyone does not know what Dysphagia is. My little ‘make mention’ of my disorder becomes a difficult conundrum. I almost always am very uncomfortable. It is an awkward topic to explain. And the question of the hour is mostly an angst-ridden question to ask: “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 come to get me and take me out to a restaurant. And I hold a napkin in front of my face as I still have my pride. The family unit is very important. But I also know in my case, I need a social component very badly also, (as my little family lives out-of-state). In the beginning my friends who were still working 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. So I’ve lost quite a few friends.
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, believe me if they have Dysphagia, they may very well want to go. They are just too 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. Thank you.
At the end of the meeting, I walked away feeling that Ed’s presentation was compelling, and the other panelist, Greg Crawley whose little boy has Dysphagia, had a story that was so poignant. The one thing I can say for sure was the NIH, staff and colleagues, led my Baldwin M. Wong was very attentive. They gave their undivided attention and agreed that Dysphagia is not well-noted or understood. In this world of cellphones and other distractions, I saw people who listened to us intently. They gave honest feedback on how it takes time to get the resources for research. They thanked us for giving them more perspective on Dysphagia. I realized, I was at the right place at the right time.
In the aftermath of the trip as I look back, my wish is that Dysphagia will be accepted as a new normal, in this country. I would hope people will understand the disorder and respect a person with Dysphagia’s wishes to dine alone. I want a sensitivity in the world to not give us the uncomfortable looks, or stares. 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 like: creative therapies, medical massage, acupuncture and music therapy. I have begun singing in the last couple of years on my own dime 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, 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 plateauing but on-going treatment.
Let me be clear about the dining out thing, it is serious. And believe me, if you accidentally lower that napkin while you are eating or don’t hold it to cover even 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.
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 little 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. And one thing for sure, I won’t be eating in public!
---Cherish My Spirit!!!