The Story of an Extraordinary Woman and how, with her Husband and 6 children, She Overcame the Sudden Onset of Paralysis
“Life is different, we’ll figure it out together.”
Alicia is the type of gal who could easily have been one of the original frontier women who traveled hundreds of miles on the Oregon Trail wagon trains to settle in unknown territory.
How would I describe her? Real, no-nonsense, resourceful, independent, proud (but not prideful), genuine, kind, wise and loving. To hear her speak is to be captivated by this authentic voice and determined soul. She is a leader, a mender, and a woman of deep beliefs with a desire to serve.
She had already won the hearts of so many. These included her congregation and her husband, whom she met at a church singles group, and also her children… “If they do not do what they are asked, then it is not in their hearts. While you can force them to do something, it will not be of their choosing and you want them to serve and respect their parents because they have it in their heart to do so.” And now she is winning the hearts of all those she has served through advocating in the world of spinal cord injury survivors.
She is a firecracker of a woman who knows how to balance the needs of others while also being true to herself. “I need to be Alicia, not the Mom, or the wife, or the church leader, and my work as a disability advocate… This is all Alicia and it is important to not lose who you are.” Her family supports her 100%, and her husband and six kids go with her to disability events.
So let’s start with a little background, so you can glean the nuggets of wisdom like I did from this woman who has so much to share.
She was raised in rural south Tennessee, then met and married the Jimmy, who would later become the Pastor of a small church, and had 5 children. Her 6th child was 3 months from being born when she woke up one morning completely paralyzed from the chest down. Diagnosis: Transverse Myelitis, a one in a million occurrence.
As she had never worked outside the home and was fortunate to have the choice of staying home and being a mother to her five children, this also meant she did not receive any disability insurance to help with the costs.
“This meant I had to rely on tax money to help.” This was a huge mental barrier for her as she lived in a very poor area and had seen many who she felt took advantage of the charity from the local churches and the parishioners like herself. “Many would go from church to church, “milk them” and would still ask for more.”
Once she gave her last diaper to a mother and was asked, “Is that all you have?”
“I just gave you my baby’s last diaper,” she said to the woman who appeared to take her giving nature for granted. These experiences made her feel “played”, and she could not relate to these people… Now she felt she was one of them, asking for the support of the others.
And, it was support she got. “In this journey I have been given a lot-love, a remodeled bathroom and home all done by volunteers, as well as the medical supplies and equipment I needed. “To whom much is given, much is required,” she says with gratitude in her heart.
“Be kind always,” she said. “Manners are manners.”
But this job is more than just sales to her and she is right. It is about taking care of people and making sure they get the best products and care that they can. No one really wants to need, or buy, catheters but someone has to be there to educate and provide for this need. Who better than someone like Alicia?
“God, don’t waste this in my life”
“I have found the more I give back, the better my emotional health. Not looking inward, during my darkest times, is a good mental health practice.”
While she struggled with her own faith after the paralysis struck, she prayed, “God, don’t waste this in my life,” and her prayer was answered. It will be answered every day that comes because I see a large and valuable contribution being made by this woman. Her voice is confident, strong and decisive, and she is a rock many will need to advocate for them, in not just their medical supply needs, but in life. She ran a local SCI support group and wheelchair basketball league, and she started a blog, ThisDisabledLife.com to share her story and what she is learning along the way. She is active in many support forums online; including the one I met her through, “Woman with SCI/D”.
And she is not turning down any opportunities. “I don’t seek them, they come to me.”
“As long as you can kiss, love and give them your heart, you can be a good Mother.”
In the early days, when she was crying and didn’t know whether she could handle being a mother due to her new condition, it was her husband Jimmy that stepped in and gave her the confidence she needed.
“As long as you can kiss, love and give them your heart, you can be a good Mother.”
But the food still needed to be made and household needed to be run. So she began to train her children to be a part of the team. At 9-years old, during the first year of paralysis, her daughter learned how to bake a chicken. “A little oil and some salt and pepper and she was the chef.”
Of course, they lived on a lot of pizza and frozen dinners too, but even her 11-year-old son learned how to prepare his “famous omelet” for the family.
Kids learned to do their own laundry and they would all “grab and fold” together in the family room.
She feels as a parent, it is her job to replace her job and to allow the children to be independent and learn the tools they need to become capable adults.
The family structure is important and she feels, “If you show you are not confident as a parent, they will breed off of that. An insecure parent equals an insecure child.”
Each of the six children, including the 5-year-old is responsible for cleaning their own “zone” and their part of the shared bedrooms. The 5-year-old has the guest bathroom and is so proud of how well he does the sink and toilet! Her 15-year-old mops the floor once a week and sweeps daily.
Once a week, they do a “company clean”. “Who’s coming?” they would ask.
“We are, we live here!” she would say.
“It’s OUR disability, Jimmy”
“We both realized we have to have our own strength. He tried to help but it didn’t work. I felt he just didn’t get it. I was paralyzed, not him. When a child dies, you are grieving the same loss together. I was grieving, he was grieving, but not in the same way. He was trying to be strong but at 1 ½ years in, it hit him too. It was his loss too.
Some couples will say, I didn’t sign up for this and leave. It was hard; we had to rebuild a life together.”
“Sex is different, you need to find what feels good to you.” Alicia is open and honest and not at all shy about discussing the intimacy of her relationship and SCI. This comes with disability; you tend to be more open in the hope that it will help others going through similar struggles. Sex is an important part of most marriages and it is not something that should be ignored. (See Dr. Mitchell Tepper’s feature here)
“At first, I wanted to please him, but as I didn’t have the feeling I did before, I felt like a puppet, doing what pleased him, being the good wife, but I started to feel resentful, and cheated. I had to talk to him. So I did, right in the middle of it… Not good timing, I know,” she laughs. “He was glad I did and said, ‘You make me feel good, and I want to make you feel good.'”
So she told him she liked her back tickled and he would do that every night. He does it every night still, until she falls asleep… after sex. It is loving and intimate, and they are both content. “Men want to make you happy, it fulfills him too”.
“We have to look out for one another”
Alicia is excited about her new foray into the world of work as this job allows her to maintain all her existing important roles and earn some money for the family as well. She brings in new customers who need supplies to ABC medical and she gets paid residual commission on each.
Since I love the idea of supporting fellow SCI men and woman who are trying to earn an income, I gave her my insurance info right away!
“We have to look out for one another.”
I agree, Alicia. Together, we are all stronger.
If you are interested in free samples or to review your current supplies and pricing, Alicia can save you money or provide better service. We hope you will give her a try.
You can follow Alicia on her websites: www.aliciareagan.com and www.thisdisabledlife.com
ABC webpage is http://www.abc-med.com/alreagan
ABC email is Alicia.reagan@abc-med.com