As my children grew and I continued to be deconstructed and reconstructed, I realized that the solution to my problem was none other than me.
My son and daughter have developmental delays in speech as well as gross motor and fine motor delays. Due to my background as a school psychologist, I knew there was a 50% chance that my kids would have some kind of learning disability. Also, as one who loves the brutal truth, the OB who performed my amniocentesis confessed to me that she also had two learning disabled children and while talking to her about my problems, she elaborated on her experiences about the challenges of identification and school issues.
While I was taking doctoral coursework at the Widener University, I had my son enrolled in a developmental kindergarten. Most of the staff were educators or had graduated so they were wonderful. At that time, my son was not diagnosed as autistic. It did not matter as long as they focused on his needs and did everything they could to help him. He was 18 months at the time. I had Jed evaluated at Dupont Children’s Hospital by one of the founding pediatricians in developmental medicine. She was very hesitant to label my son, Jed, as autistic. So he got the best of what was offered in pre-school at the time. I am very grateful to this day for that experience.
Having both my hips replaced gave me some great functionality and I could walk again. After the procedure, I lost a great deal of weight and I could live somewhat normally. My marriage was a continual struggle with financial instability and my husband’s inability to deal with my arthritis and our two children. I later found out that his IQ was in the Low Average range. I worried, became angry, and resentful to my very own temper tantrums. He could not maintain a steady income which created a financial havoc for the whole family. I continued to work part-time since I had two children who required extra time and support. My marriage was bad and filled with abuse anyway, but the day Eric pushed me down the steps on a walker was the last straw. He kept saying he couldn’t handle it anymore and the fact I would always hold him accountable made things even worse. This lead to severe arguments that alienated him even more. He finally moved out and for the first time in what seemed like an eternity, I felt normal again.
Forever Forty and Freedom
After Eric moved out I danced, drank, and got lots of attention from men. Heck, I begged for even more, as I felt I deserved it. I think that was when I was most vulnerable and got into some real jams in that I was mentally twisted and broken down with an image of “everything is fine” and “I can do everything”. To digress, I did not get any real emotional support from family on either side and honestly, I was seething that I had to go through so many horrible things in my life. I worked hard to study and graduate school only to marry someone that eventually left me. I resented my husband and family deeply because of their lack of humanity. They saw me as a burden and I think that had I died, that would have made them feel relieved. All I wanted was to be a normal person. Hell, I was supposed to be everything my brothers were and more. Soon enough I found myself on the verge and I was beginning to drink myself to death. I kept doing this for weeks to the point where the alcohol wouldn’t numb the pain anymore and my knees were hurting so much I could barely sleep at night.
By 2005, I was back in bed with spinal stenosis, laminectomy, and the docs telling me my surgery was unsuccessful. I had a pain interventionist tell me that I needed a spinal fusion. The pain level warranted a prescription for methadone. I was devastated and went through several physicians, nurses, and ER’s. After the prognosis, it was confirmed that I needed a spinal fusion I followed the doctor’s orders and drank as much vodka as I could handle. As usual, the human being that I called a spouse was working on the weekend and I was alone. My son didn’t have many friends, however, my daughter did when she started pre-school. I always believed that I could not say no to play dates because I limped and used a cane. I felt guilty for my condition many times, since it limited what I could do and who I could meet up with. I was always drunk and I had methadone in my system. Because of that, taking my daughter to the play date and spending time with her was impossible. My husband often worked on the weekends and I would rarely get to spend them with him. When I told him about how I feel about it, he retorted that he has to make money and why would he waste his time at home anyway? He continued to say that I should know better and that his parents regarded me as “persona non grata anyway.” After so many years of pain and suffering, I reached the point where I’d buy into these things, because I was convinced that all was hopeless after the doctor’s diagnosis.
Being the good disabled woman, I listened to my drunken sorry ass self that I had to act as a proper mom. I got in the car and took my daughter to the play date. On my way back home I was patting myself on the back for it thinking about what I’d drink later. Minutes after I entered the house the doorbell rang. I opened the door and there was a uniformed officer asking what car I owned and had I been driving. Someone filed a complaint saying that they saw me driving erratically. I thought about lying to the officer, but I knew that if I’d do that, he’d definitely suspend my license for a whole year. How did I know this? Well, being a school psychologist and having dealt with many substance using teens, the answer was pretty clear to me. To no surprise, I was charged with DUI. Great going, huh? While I saved many lives as a psychologist, I wasn’t doing great at all and the DUI also got me fired. My doctor recommended that I attend a support group and I accepted. I entered into therapy with the head of the Psychiatric Services where I had attended graduate classes. It was the best decision I made. She’s the best shrink I have ever known and also an overall great person. She was grounded, consistent and also had a lot of experience treating women with various disabilities. This is key to psychological services for the disabled in that if you have no knowledge and/or relevant clinical experience, you could be making dangerous assumptions that would put the patient in a very scary position.
By 2008, my knees had all the injections, synthetic cartilage, and ice packs that they could take. I’m grateful to the good doctor at the Rothman Institute who monitored my knees from 2000 to 2008. I lost between 1” to 1.50” of height and both my knees were bone on bone. In January 2008, both of my knees were replaced. My ex-moved back into the family home to help out. By April 2008, I was working part-time as a consultant, walking, and dating.
One day my ex-husband had his brother threaten to put me in jail if I did not agree to move out of the house. When he learned that I have a boyfriend, he stopped paying the mortgage. I spoke to my lawyer about this and he recommended that I claim disability benefits, give up my children, and accept my lot in life.
My shoulders began to hurt quite often and the plague of arthritis was slowly, but surely coming back for a rematch. I started looking for a good doctor right away and I found a wonderful doc very fast. He was a sports medicine orthopedist and boy did he do everything he could to keep my pain at bay. One day during a routine visit, he asked me whether I thought about getting my shoulders replaced. I looked at him for a few seconds and nodded. I couldn’t carry heavy bags, drive nor do any other similar activities, so going through this procedure was a good idea.
Two years later, the doorbell rang the day after Christmas. It was a sheriff with a notice of foreclosure. This was the worst day of my life as a mother, woman, and human. All I had left was the house. The home was the one I dreamed of for my children and I to be a family and grow old. My shoulder replacement was in February 2010 and my eviction notice came at the same time.
I woke up in the recovering room and felt like a sparrow that had their wings plucked. I survived horrendous pain at that time and it took intense throbbing pain to get my blood pressure pumping. I had a breathing issue in OR and they could not control my pain. I had a terrible experience in hospital and argued with the doctors, nurses, and anybody in South Philly. I went to intensive inpatient rehab. Things weren’t pretty and I left early so I can return home early. When I got back, my ex had a roofer drop by to estimate how much it would cost to replace the roof. After that, a court order came evicting me from the property. If I wouldn’t evacuate my home by April of 2010 I would also have to pay a hefty fine.
Home Sweet Home
I left my home and found an apartment soon after that. Meanwhile, my husband took care of the children. Somehow, he thought they would stay with him. In order to get the apartment I was currently living in I had my friend co-sign for it. It is a first floor and three bedroom apartment that’s also wheelchair accessible to the front door. I also have an accessible first floor bathroom with a walk-in shower chair. After the school year was over (2010), I made my move and what I mean by that is that I got free legal advice from the women’s center. Having gone through so many surgeries, I couldn’t be as productive and the chaos in my personal life furthermore took its toll on me.
I felt like a shipwreck. The only person who offered to help me with advice was a lawyer I found online. He’d offer help and resources for parents with disabilities. This was a very dark time for me and after going through so many things, here I was again in a situation where I felt I couldn’t take it anymore. I often found myself waking up and crying in the middle of the night. I was alone most of the time, but at least I had a few friends and colleagues that I could talk to. My daughter put the blame on me for losing the house and this hurt me a lot.
Later on, I had to send my daughter and son to counseling. They both got Medicaid and qualified for counseling and extra school resources. My education saved me numerous times and my ability to get up and out of bed daily (when I wasn’t recovering from surgery) helped me a lot.
I had attendant care and I learned to live for the things I was able to accomplish every day. With my entire body aching, I had to work hard to do the things I had to do instead of choosing the things I couldn’t do. I believe that once you get used to this kind of thinking you see life with a bit more boldness and maturity to the point it gets spiritual. Your life starts to become measured by the do’s rather than the cannot’s. After all, who would ever want to be measured by the things he cannot accomplish?
I will be 55 in July and to me, this is a big milestone in my life. I am actually surprised of how far I got and that I’m still alive and still have my 2 dogs and 2 kids next to me.
My daughter will graduate high school and is headed for community college. My son works for me, learning the ropes of running the family business and so far so good. I’ve been through a lot of horrible things in my life, but they helped produce a seasoned educator, mom, and a true warrior. Despite my nightmarish pains, financial challenges, and everything else, I still managed to get out of bed and reach this point where I can finally say I’m beginning to experience a kind of peace and happiness that I’ve long forgotten existed. Divorce is a turning point in one’s life and having a meaningful and serious relationship afterwards is difficult. As my condition fluctuates, so does my relationship with my boyfriend.
I was lucky to live in a part of the country that has exceptional medical resources, but my education also helped me cope with it all through these long, bitter years. Having a certain disability doesn’t mean you have to walk a certain path.
Having gone through so many things I believe I understand how it feels to be lonely, desperate, and feel like your whole world is falling apart. Therefore, I’d be happy to help anyone who feels they’re at a crossroad and needs some guidance.
In 2014, I had a bone infection which caused me to lose a hip and go into shock. While rehabbing, my brother told me I had to look at things like a soldier and get in my tank. He died of lung cancer in 2015.
We gather our strength from so many places and so many people, but we only realize this when we’re at our lowest. I learned to walk again by visiting my brother and having to walk long hallways with him by my side.
- Disabled Parenting Part Two: My Life Deconstructed and Reconstructed Again - March 21, 2017
- Disabled Parenting Part One: My Life Deconstructed - February 16, 2017