for Technical Assistance
Connecting people with disabilities who are facing day-to-day barriers with those who have overcome them.
Meena was paralyzed from her Level T12 to L1 down and has been using a manual wheelchair for 14 years. Since her injury, she is raising three children, one born naturally after her injury; she is writing a children’s book series called Mattie Has Wheels; she is a Spinal Cord Injury Peer Coordinator for the National Spinal Cord Injury Association; she teaches aerobic classes; she is an activist in her community; and she writes a blog. This is her story.
I fell from a 10-foot balcony shattering my vertebrae and hurting my spinal column. From that point on, I have been using a manual wheelchair. I had stepped out on our balcony for a break, shutting the door behind me. I had been up all night with my three-week-old son, Miles. He and his three-year-old sister, ‘Jazzy,’ were safely inside. Our home was newly built and as I tried to open the door, I realized it had locked behind me. Thinking of my children alone inside, I did the unthinkable, I tried to climb down, but had to let go because my body was too weak to hold on.
I knew I was in pain, but where the pain was coming from, I had no idea. My legs felt heavy, and I thought that perhaps I had broken both legs. For 45 minutes I screamed for help while leaning on my elbows. I couldn’t lie down and I couldn’t sit up. When help finally arrived, and I knew my children were safe, I began to concentrate on my surroundings and what the paramedics were doing. One told me I had broken my back, but I thought to myself, “What is he talking about, I just broke my legs!”
I was Life-Flighted to Memorial Trauma Center in the Texas Medical Center. At one point, all I was doing was looking at the ceiling; seeing all the bright lights; and being aware of all the attention surrounding me. Someone leaned over and looked at my face and said, “I’m not sure if you know what this means.” For some reason, blindly I nodded and said, “Yeah, I do.” So in a way, I knew what this meant, but I still didn’t really grasp the concept because it was so fresh. I was truly clueless. I literally thought, “Okay, so I went from broken legs to now I can’t walk; I must have really hurt my legs!” I felt a sense of relief, though, that I was at the hospital; I was in good care; they were going to figure it out; and they were going to make the pain go away.
I was told my surgery would take 10 to 15 hours, and that they would use bones from other areas of my body to fuse my back in order to stabilize me, thus allowing me to sit up. My surgery was five days later. I’m not sure, but the delay in surgery may have been because I was so weak due to both the fall and the fact that I had just delivered my son three weeks earlier.
In the meantime, my mother and sister arrived from London. I went into surgery with a picture of Mata from my mom (which in Hindu means mother of mothers) and a prayer to God. “God, just let me wake up to my children.” And I felt at peace, the most peace I had ever experienced. After surgery I remained in Memorial Hermann for seven days before they transferred me to TIRR.
Two therapists came into my room the morning after I arrived at TIRR and began explaining the forms of treatment I would be receiving. Everything they were saying was about me being functional from a wheelchair. They asked if I had any questions. At that point, I bawled. I said, “I thought I was supposed to get help to walk again.” For some reason that came out of my mouth as if I really knew, but for some reason…it was like, “But wait a minute, how can you not just help me get up and walk again? I don’t understand.” I thought they were being quite mean, actually. But they said, “Meena, you are here to be functional in the best way that we can possibly make you, and you will be functional from a wheelchair.” It was then that it hit me, “Oh my god!” So the bones from my pelvis to fuse my spine and the rods going from my collarbone to my tailbone were to allow me to sit upright? That was their thinking? My thinking was that they were making me walk again!
At the same time, my husband brought me a picture of my three-week-old son and I realized, “I’ve got to get out of here. I’ve got to get home. I don’t care if it’s in a wheelchair; I just need to get home.” That was when my fight started. It was no longer “them” taking care of me; it was “me” fighting for myself.
I was in TIRR for about six weeks. They fitted me with a TSO jacket; a hard plastic two-piece jacket, formed to fit my body and tied together on either side. Every morning before I got out of bed, the nurses would help me put on this jacket. It allowed me to sit upright in my wheelchair and it allowed me to heal.
For those six weeks, with the jacket on, I learned things like how to go to the bathroom; how to use a catheter, and how to bathe. Physical therapy included upper body strength and range of motion. The goal was to make me functional so I could go home and do what I could while wearing the jacket. It was to remain on for another month. I could not return to TIRR for rehab until I could function without the jacket. They had to make sure that my back was healed.
At home, I had the support of my family and we did what we needed to do, but I remember the nurse would come in the morning, get me dressed and at night she would take care of me and get me into bed. The moment I was in that hospital bed, I was good for no one. No one could touch me and no one could move me other than to turn me to prevent pressure sores.
When I returned to TIRR, they would have me sit on a mat and work on my balance. I was like a baby; I had to learn how to sit up again. They also fitted me for a wheelchair. Insurance only covered two weeks of care and I was sent home for the second time. It was then that it really hit me. I was brave in the hospital; I was brave at the rehab center; but when I came home the second time it was different. I was 30 years old; I was now paralyzed; and I had to learn to be self-sufficient all over again. I remember going around in a fog. It’s almost like you have to be this propeller for everybody else. I knew I had to get better for me, but more importantly, I had to get better for my kids.
Six months after my injury, my husband of 13 years sat beside me and said, “I need a separation.” I looked at him and simply said, “Okay.” I felt it was my fault. I thought it was because I was damaged; I was in a wheelchair; I was not lovable anymore. Soon afterwards, though, I discovered it was because he had found someone else. The divorce followed.
My mom flew back and forth from London to help me and my children, and I got a nanny so that I could go to outpatient therapy. The doctor said I had 3 to18 months to try and walk again, so I made it my job. I never wanted to look back and say I didn’t try.
My brother from Dallas helped in any way he could. He was there for me from the get go and he just, bless his heart, helped me so much! He left his wife and his child in Dallas to help me. My family--my mom, my sister, my two brothers, and my grandmother--they bent over backwards, quite literally sometimes to help me out. They were my support.
November, 2003, I met my new husband. We were going through pre-marital counseling at a Catholic church in Sugar Land when the priest--just a wonderful, wonderful guy--picked up on something I said and referred me (and the church paid for it) to a psychologist for Jasmine, my daughter. While the psychologist was treating her, the next thing I knew, the psychologist was treating me for free!
She said, “You know what you need to do? You need to cry! When have you cried?” I looked at her and said, “What do I do to cry?!!!” She told me to go home, and while the kids are at school, get the saddest movies I could think of and just watch them.” So I went home and remembered my mom had been sending me DVDs of Indian movies. My nanny explained these “Bollywood” movies in the perfect way. She said, “I love Indian movies. They laugh and sing when they’re happy and they laugh and sing when they’re sad! Most Indian movies are very dramatic and very sad. There’s always a point behind them that just gets your heart!” Well, oh my god, I cried so much for eight months while watching these movies, to the point where I didn’t even know why I was crying!! I would just sit there and just bawl and bawl and bawl! But after those 8 months I felt like a new person. I really did!
When I got pregnant with Jamie, it was a shock! I had no idea that I could get pregnant. David and I had the understanding when we got married that I wouldn’t be able to have children. I had been told three days after my in-patient visit at TIRR that I should never think about having children again because I was now disabled.
Missed periods, flu symptoms, feeling nauseated, and craving oranges, though, drove me to my neighborhood CVS for confirmation. It took me a hour to buy the EPT strips because I met EVERYBODY I knew in the store, and I didn’t want them to know what I was buying, ha!
On my first visit to my GP, I was told that I may not be able to carry this baby; that if I did, I would have to have a C-section; and that I would have to have a high risk obstetrician-gynecologist in the Medical Center.
I came home after the visit with the doctor and the only thing I could think of is, okay, I’ve been pregnant twice before, let me just follow the protocol that I went through before my injury. So I called the Urology department at TIRR and talked to Margaret. I told her I was pregnant and asked if it was okay to continue taking my bladder medicine. I knew I was not supposed to take certain medicines while pregnant. She said the medicine was fine, but added, “I hope you’ll see Dr. Hunter Hammill, one of the Obstetricians and Gynecologists at TIRR.”
The first time David and I met Dr. Hammill, he asked me, “What have you heard so far? I want you to tell me everything you’ve heard about you carrying this baby.” I told him everything from the time I was at TIRR years ago to my most recent visit at the doctor. He closed his eyes, shook his head, and he said, “I want you to forget about everything! You are going to have this baby and not only are you going to have this baby, but you’re going to have this baby naturally!” I looked at him thinking, “Good lord, is this guy crazy?! I’m paralyzed! How am I going to have this baby naturally?”
At my seventh month I could no longer sit in my chair. It was very hard so I resorted to sitting on the bed. I was still pretty functional and independent. I was still taking care of Jasmine and Miles and taking care of our home. But we did have a maid service clean the house for me. Towards the last week of the seventh month, though, things started to get a little tough for me. I started spotting a little bit and I was getting these pains in the lower right side of my abdomen. That was the only thing that Dr. Hammill and I had to figure out - what were my contractions going to feel like? He had been doing this for over 30 years. He told me because your body over-compensates (you feel things in other areas of your body if you can’t feel them in the normal area), we would have to figure out what my contractions would feel like. He said he had a lady who had her contractions in her shoulder.
Well, this pain that I had been feeling for a long time all of a sudden was riveting really badly on the lower right side of my abdomen. I didn’t know whether the pain was bladder spasms or contractions. I called Dr. Hammill and he said the same thing he’d been saying for the past four months that I had been having this pain. He said, “I can only know if you’re on a monitor; I’m not going to know otherwise.” Again, I go to the hospital a week before my eighth month, and I never leave the hospital before giving birth--those bladder spasms were actually my contractions!
The only difference between a woman that is paralyzed having a baby and a woman who is not paralyzed is just trying to figure out what your body is trying to tell you. That’s it! It’s actually quite beautiful to think that all we were trying to figure out was what my contractions would be. The interesting thing is, the reason he didn’t want me to go home, was because the very next day my sensation level changed and I could no longer feel that pain, those contractions. He wanted to wait until the eighth month to induce. The baby was already contracting; I was spotting. He said in three or four days, if the symptoms continued, he would induce, but he wanted to wait as long as possible for the safety of the baby.
In my eighth month, I gave birth to Jamie. In full labor my sensation came back and I was able to push him out--even Dr. Hammill didn’t think I would be able to push him out without the use of forceps. Can you imagine how powerful that made me feel to deliver my son without the help of forceps? In that moment I went from having all these crises in my life--the injury; my first husband leaving me; not knowing how I was going to raise two children by myself; scrimping and saving on a disability benefit check; no one wanting to hire me; told I would never give birth again--and then, I not only gave birth to a little baby boy, but I was able to have him naturally!
Four days later we came home with Jamie. At the same time, Miles and Jazzy came home from their weekend trip to Galveston to see their dad get married by the beach--the same day I gave birth--pretty bizarre!
The moment my three-year-old daughter saw me in the hospital for the first time after my injury, our relationship was never the same. She is a teenager now and even though I’ve taken care of her; even though I’ve raised her and done the best that I possibly could…whatever happened that day, it didn’t just happen to me, it happened to her. That little girl and I were so close, so inseparable, and even though she was just three, we were buddies. But that day, when they put her on top of me while I lay in bed with tubes going everywhere, and I held her face, she was never the same. I was never able to grasp that relationship with her again. When her father left and it took us three years to get back on our feet (pardon the pun), I really lost her. She had to have felt insecure and unstable as I did, but children can’t speak for themselves.
Since I married David, who has taken care of both Jasmine and Miles as though they were his own, and now that they have this younger brother (that’s not a threat, not taking their place, he’s just part of our family) whatever fears we had are gone! Jasmine has become more affectionate and saying “I love you” has become more comfortable for her. That’s how sad it was for her. She could see what we were going through; how we were struggling. But, in the end, we did it; we survived!
Jasmine recently moved in with her dad and that has been hard on me, but it’s something she wanted/needed to do. She is going to school and will graduate next year. We’ll see from there what happens.
I’ve written two books. Actually three books, I’m now waiting for the publisher on the third book. I decided no one was going to hire me so I started doing what I love to do, I’m writing! I’m writing a children’s book series called Mattie Has Wheels. She’s a little girl in a wheelchair and the book demonstrates and illustrates how she goes about doing her daily things. There are very cute pictures and wording that describes things from her being able to play basketball with her friends to helping her Mum and Dad in the kitchen. My new book, coming out in the summer, will be Mattie Has Wheels - Traveling on a Plane.” Mattie will be traveling alone to visit her Grandma.
The series is a non-offensive way to educate both children and adults about life in a wheelchair. At the time of my injury, there were no children’s books like this for my own children to read and understand what life was like in a wheelchair. Also, at the time of my injury, I realized just how much I took for granted. One moment I’m walking and the next moment, I’m not. Unless you live with a disability every day, you don’t get it and its okay, but we need resources out there to educate.
My goal was realized when my first book was published. I found that parents were listening, teachers were listening, and children were listening. Now I have a publishing company that has picked up my entire series, both my written and future work on this series. It’s just beautiful.
When I was pregnant and in a wheelchair, I found myself, once again, with no one that was having or had the same experiences as I did. I wanted to talk to mothers in wheelchairs that could share their experiences with me. But just like the search for Dr. Hammill, the search was not easy. I did find one mother in a wheelchair that is still my good friend today. She told me how she took care of her kids and it made me feel better.
Ms. Wheelchair of Texas is really not a pageant; it’s a gala. My platform was inclusive parenting--to bring all the resources to the forefront so that men and women with disabilities could have the necessary contacts at their fingertips. When I became Runner-Up and I started really working actively on what I had promised. So with the National Spinal Cord Injury Association Houston and with my partner, Julie Collins, we’ve formed Connections. It’s peer-to-peer mentoring, matching people with other people according to their disability and their stage in life.
I’ve also created a ‘Fusion Wheelchair Aerobics’ class that I teach for free every Saturday at the Houston Parks and Recreation’s Metropolitan Multi Service Center. I was never athletic before my injury and I was not athletic after! I was born with two left feet and after my injury I now have two left hands. That’s the way I explain it because athletics is just not in me. I admire those folks that do go out and get Olympian Gold Medals. I’m just not one of them! But one thing that I seemed to love as a little girl was dancing. I was a ballet dancer for seven years and I took tap dancing for several years. I was very good. Finances stopped me from going further, but what it did for me after my injury was priceless. I now teach ‘Fusion Wheelchair Aerobics’ which is my love of Bollywood music fused with American aerobics. I am basically showing Indian moves that exercise any part of your body. Whatever you can feel, you can move it! I have a lady in my class that can only move her eyes and she dances with her eyes! That’s just how beautiful it is. We all just have fun! It’s free because it’s a social gathering, too. You notice that people feel good when they’re around other people in our community.
Since going to City Hall and talking to Council members and the Mayor about the transport services in Houston (companies that want to provide transportation, but don’t want to provide those same services for the mobility impaired), I was a part of assisting in getting the issue out to our community and asking speakers to attend City Hall. So my advocacy has definitely grown.
NuMotion blog: I will also be writing two blogs a month for NuMotion (www.numotion.com). My first was actually about giving a really good insight into what I’ve been doing so far and what brought me to this point. My second is titled, “We are testing, we are testing.” It talks about the way that one would parent from a chair. It is different. When you don’t have the physical abilities, you use your voice, and that voice has to carry you in a way that it doesn’t for other parents.
Initially, it’s the physical--such as learning how to adapt in a wheelchair, through ramps and curbs and taking your wheelchair in and out of a car. I function from a manual chair, so I have to break it down and take it apart. I’ve always driven just regular cars with hand controls. I now drive a cross-over, which is lower in the front and higher in the back and the doors open nice and wide in the back where I can actually put Jamie in safely in his car seat and not have to be at an angle.
Because my injury was a fall, people wanted me to pop wheelies and learn how to get up from the floor to the chair. Trust me; I wasn’t going to do anything that may cause me to fall. Then a year ago I did fall and I realized that my body was a bit weak, so I am back at physical therapy to strengthen my core muscles. The other obstacle I’m facing now is, unfortunately, my hands. As I’ve become more comfortable and more functional in my wheelchair and use my hands so much, my left hand has developed osteoarthritis and I have carpel tunnel in both hands. My left hand is worse than my right. Cortisone shots help the carpel tunnel, but the osteoarthritis will only get worse. I’m at occupational therapy now working on strengthening my fingers so that I can use my left hand as well as my right. The next step--Do I get into a motorized chair which means a new vehicle and changes to the house? There are always decisions to be made…
My TIRR Peer. At the time of my injury, support groups were new and other resources were few. We’ve gotten so much better in the last 14 years. My TIRR Peer, Laurie, had the same level of injury as I had. To this day I remember she was dressed in a black turtleneck and black print pants and she just looked so lovely with her blonde hair and her little manual wheelchair. She started talking about her marriage and that she didn’t have children because by the time she got married it was too late to have children, and the whole time all I could think of was, “Wow, okay, I get it.”
Later she invited me to her home and showed me how she got into and out of her bathtub, and she gave me ideas of what to do with my own home. Just to see and hear how she functioned was priceless! She and her husband are such wonderful people and, to this day, we are still friends. She has been such an anchor to me.
TIRR! I’m so glad this injury happened here in Houston. I didn’t understand anything that was happening to me, but they did! It has to be very hard to work day in and day out with patients where some get it and some just don’t. I was so lucky and still feel so lucky to this day!
Everything! I was so afraid! How was I going to take care of my baby from my chair? How was I going to take care of my three-year-old when I got home? All I’d ever known was to walk, to have my whole body working! Now I only had my upper body. How was I supposed to learn? Could I do it?
Unfound? Yes! It took me awhile, but I did it! How? Through the guidance of others; just constantly asking questions and having them help me figure it out.
First--Be strong and get rid of negativity. Ena, one of my occupational therapists said, “It is up to you to go home and get rid of the negativity. Get rid of everything negative in your life because that is how you need to live it now!” To this day, I have never forgotten what she said. It is the way I have lived my life. I believe that mindset has allowed me to be able to continue to tackle constant obstacles that come on a daily basis not only to me, but to all of us. Maybe it was the reason it was so easy for me to let go of my first husband. So my message to Newbies: Go home and just don’t allow anything negative. Don’t let the negative drag you down. Concentrate only on the positive.
Second--At the time of my injury, I wouldn’t say anything to anybody else, but I would yell at my mother. It wasn’t until my mom went back after a couple of years and she was fighting breast cancer that I realized the stress she was going through. She was mourning. She had lost a part of her daughter. She, too, was learning how to adjust to my needs. I was expecting everyone to have patience with me, yet I had none with my mum. My mother would get up every day; make sure the nurse was doing everything possible for her paralyzed daughter in a hospital bed; make breakfast for her grandchildren; run her daughter’s household, and I’m yelling at her! I didn’t understand that my injury affected her as well. I never understood what she was going through. I took my frustrations out on the one person who was helping me the most.
Third--I’ve been through a lot and survived. Was it through the grace of God? Was it the fact that I have my family and friends for support? I don’t know. I guess I was stronger than I realized and I didn’t let anyone tell me I couldn’t do something. The more they discouraged, the angrier and more determined I became.
When a person is hurting and they are yelling at you—don’t say anything. Just let them get it out! They just want to get it out! The worst thing you can do is talk back! So go out, take a deep breath, run around the block, whatever you need to do, and then come back. That’s the big thing--come back; don’t run away. Talk to other people in similar situations. Find support. The injured person may be like I was--I didn’t understand that my injury affected my mom as well.
The fact that some areas of Houston are accessible has influenced my life, but some areas are not. I would like to think more could be done, but that can only happen if there is accountability. Lex Frieden has done an amazing job in the last 20 years for this country; to do what he has for us as a disabled community has been huge! The truth of the matter, though, is these regulations are in place, but people are still out there treating us as though we are the ‘Forgotten.’ I think the ADA is okay, but we still need to work on enforcing regulations.
My proudest accomplishments are my career choice as a published author and the fact that I’m no longer afraid to voice my opinion--I want to make change.
Absolutely! Absolutely! I insist on it! One of my joys, other than being an author, is being a mentor to others. People need to feel like there is someone there for them. No one wants to feel alone. That’s the hardest thing of all. And I just don’t want anybody to think that they are alone.
Questions or comments may be sent to Meena by e-mailing the Southwest ADA and referencing ADA StoryTeller - Meena in the subject line.