My Beloved Ma

Yesterday, September 14^th, marked one year since my beloved mother left this earth at the age of 68. I still cannot fathom that she is gone. When I think of her, I still think of her in her chair in her living room, draped in her prayer blanket, handmade by the ladies in her church, watching TV. Of course I try not to remember the myriad attachments she had, like the oxygen machine, her feeding tube, and all the health paraphernalia she had on the table beside her.

I try not to remember the tired look in her eyes, the effort that was expended when she would use her walker to walk one lap around the kitchen, or her labored breathing due to only having one lung. I don’t like to think on these things, but it is so hard as she was sick for so long. I try not to dwell on what was supposed to be a routine hiatal hernia surgery gone terribly awry on April 22, 2005.

I try not to focus on the proximal distance between us because she and my father lived halfway across the country. I don’t want to think about the coulda’s, woulda’s and shoulda’s.

Instead, I shall celebrate her life and the joy that she brought to my life, my husband’s and my children’s.

She was an awesome mom; she was “Ma” to me. My Ma was not only my mother; she was my friend, my confidant, my protector, my cheerleader and so much more.

My Ma loved her husband, my father for 50+ years. She loved her four children. She loved her daughter’s-in-law and her son’s-in-law.  She loved each and every one of her 13 grandchildren. She loved to brag about all of our achievements, and she was always there to cheer us on when we stumbled.

My ma was the one I always went to when I had a question about anything from flowers to recipes to remedies. She was my go-to gal. I could always count on her. I find it such a shame that she missed the whole iPhone, FB, Skype, YouTube, Pinterest etc. era. She would’ve loved it all.

I wish I could have FB’d with her, and I would have on a daily basis. I would have loved to share a funny video via YouTube with her just to hear her contagious laugh. I would have loved to Skype with her so that I could see her beautiful smile. I know if she could have Pinterested, she would have had a bazillion boards.

My Ma was a beautiful soul. I miss her daily. I think of her often. I miss her affirmations of love. I would love to hear her refer to me as “a neat kid” one more time.

Excerpt from my dad’s thoughts about yesterday…beautifully articulated:

“To my dear sweet gentle bride how I have missed you this past year.

I can’t believe that it has been a year since you left this life. It seems like yesterday when you asked us to gather around your bed for one last time. This wasn’t the first time we would come from out of town prepared for the worst but still praying for the best.

Over seven and a half years of recuperation this scenario was repeated several times. But, this time you lowered your head slightly and wrinkled your brow a little as you gave a stern look in our direction, as if you were about to scold us, as only a mother could do. You pointed to each one of us and made us promise to look after each other when you were no longer there to watch over us and protect us. That very moment we all did take up that solemn promise to you and agreed to do as you asked. Now, it is up to each of us to individually search our hearts and know whether or not we have kept that promise!

You are sorely missed by those lives you touched and by all who knew you and loved you. But, none more than the one whom you built a life with. A life of thousands of thoughts, plans, events and dreams that we knit together with each other growing and building that life. Hardly a day goes by that my memory doesn’t dig deep into the past and somehow recall one of those many thousands of something’s that we shared together over those fifty years we were together.

I praise God for that life he gave to us. May God forever rest your soul. I love you sweetie.”

I praise God for my mother’s and father’s testimony of love and devotion. I will always miss my Ma, but it will be with the fondest of memories. May her beloved soul rest in the peace of Jesus today and always.

Twenty Questions…and answers

Sometimes friends, family or people in general want to know what it’s like living with a chronic illness, or what my hopes and dreams are, or what I miss most. Here is a sampling of those questions and answers from my perspective.

1. What’s it like living with a chronic illness?

Well, I must admit that having somewhat of a diagnosis is nice, but I have to say that life as I once knew it is gone. I’ve had to go through a grieving process which I still believe I am in. I have learned the true meaning of “one day at a time”, sometimes for me, it’s one second at a time. I have had to try to find a “new normal” and that can at times be really challenging. I don’t want a “new normal”, I want my old normal. Heck, at this point, I’ll settle for half-way normal J

2. What have I learned through all this?

I have learned to appreciate the small things like waking up each morning, I’d rather that than the alternative! I’ve had to learn that, I am indeed, NOT in control anymore. I’ve had to learn to ask for help and rely on others, something I am definitely not used to. I have learned that I can and will live with this, and do it to the best of my ability.

3. What is the most disappointing news concerning this illness?

The most disappointing news is that there is no real prognosis. I have had to do much of the research on my own as many doctors in my area do not even know what POTS or Dysautonomia is, much less how to treat it.

4. What do I do to get out of a funk?

When I’m in a funk, I try to remember that while I cannot control my physical situation, I can control how I react and respond to it. I can choose to find joy and happiness in the things I can do. I try not to dwell on the negative, and sometimes that is so hard. I do admit to occasional breakdowns and many pity parties where I am the only guest L If I’m really in a funk (what most of us call a “flare”), I pray a lot, read, listen to uplifting music, meditate and try to rest through it.

5. What would I like to do if I was not ill?

Honestly, I’d be quite happy if I could take my teenage daughter to the nearest Starbucks, have a coffee and a day of shopping. I really don’t like to shop, but I know that that would be something that she would love to do, and I’d gladly do anything to make her happy. I would also like to enjoy life with my family once again. I would love to be consistent at just about anything. I would love to be able to drive…where I want and when I want. I would love not to have to rely on others so much. I would love to give Big Handsome a break for once.

6. What do I miss most?

I miss doing what I want, when I want the most.

7. What have I done that I never thought I’d do with this illness?

Start a blog. I really don’t think I would’ve started one if it hadn’t been for the hours spent in bed, online instead of out of the house enjoying life. I’m glad though, all the same. Something else I never thought I’d do after my illness was going on a cruise. My husband and I celebrated our 20^th anniversary on a Caribbean cruise and are looking forward to celebrating our 22^nd anniversary on an even longer Caribbean cruise this year. I took a bit to get my meds sorted out, but once I did, we had a wonderfully memorable time together. Our first cruise was really our honeymoon celebrated 20 years later as I was in college when we got married and didn’t have the time or the money for a honeymoon. I must say that it is such a blessing to be on a continuous honeymoon for 20+ yearsJ

8. What I think about the majority of doctors I have seen?

I think the majority of doctors, save my current GP are all complete idiots! I do have some bit of respect for the knowledge that they incurred through years of med school, but somehow, I find each and every one that I’ve seen to be severely lacking; whether it is in compassion, general bedside manner or just plain knowledge of disease and the body. I truly believe that everything happens for a reason. We are sick because there is a reason, an underlying condition. I think all too often doctors are only knowledgeable in treating the symptoms and not the illness as a whole, not treating us as a whole. If we don’t fit into their little box, or their med school books, well, we are SOL! It is really unfortunate and has left a really bad taste in my mouth.

9. What is the biggest adjustment I’ve had to make?

The biggest adjustment I’ve had to make is to learn to rely on others. I like doing things my way and I like being in control. I think someone upstairs  had something else in mind for me J

10. My favorite show?

I used to love medical shows, like House and the like. Now, I can’t even watch those anymore. I like to watch benign shows now; shows that I don’t have to think about, like the shows on HGTV. Since even little things set me off, I find it hard to watch murder and mayhem, medical shows, reality TV, etc. I admit that I do like to watch TV drama series though. I enjoyed “Brothers and Sisters”, that American Teenager one (can’t think of the name), British shows like, Bramwell, Downton Abbey, Doc Martin. When I watch something, I just want it to be numbing and I don’t want to have to think too much about it. Lame, I know, but when I have time to watch anything, it’s usually right before I go to sleep, so I don’t want anything too stimulating.

11. My favorite song?

 I just discovered Pandora and love it. I have new found favorites such as, The Fray, Coldplay, Daughtry, Nickelback. I guess they aren’t really new found favorites as I’ve always loved their songs, just didn’t know who or which band played them.

12. My favorite saying?

I have two favorite sayings: This too shall pass which I have tattooed on my inner left wrist to remind me of my late, beloved mother (she passed away 9-14-12). This saying is something she would always tell me when things got tough. She was a tough woman. A woman I admired and loved with all my heart. A woman that fought for seven long years after a botched hernia surgery. She went from being a relatively healthy, always vibrant woman (married to my father for almost 50 years, she passed almost one month to the day before their anniversary) to being an invalid on a feeding tube with only one lung; all because a doctor screwed up (I’ll have to save that story for another post). The other favorite saying is of course where I got the title to my blog from. It just came to me one day out of nowhere. I might be helpless at times, but I am never hopeless. Quite frankly, that is my mantra these days. With the love of Christ, I am never hopeless, and that is such a wonderful truth and feeling all rolled into one.

13. What do I do as far as work and career?

I began a career in Elementary teaching after college. I only taught a short three years before Big Handsome and I decided to enlarge our family. Since then, I have homeschooled my two children, now teenagers in high school. I’ve always quasi joked that had I had a job and my children went to school, I would’ve had to quit and homeschool them after my diagnosis anyway, so I skipped that whole step. I thoroughly enjoy teaching my children at home and wouldn’t have it any other way. They make me so proud!

14. Something you might not know about me?

Something many might not know about me is that I would love to one day open a coffee shop/bookstore. I would love it to be something along the lines that you see in movies, where there are shelves and shelves of books, an armoire with board games, and velvety couches and chairs all around and  people can just come in, relax with a good book, and a great cup of joe!

15. Something I really miss?

 I really miss driving…just going where I want to go, when I want to go.

16. It bothers me when people say…   

It bothers me when people say “Wow, you look great, have you lost weight?” First off, I’ve never really been overweight, so what are they trying to say?? I do take the compliment graciously, but in my head I’m thinking…”If I felt as great as you seem to think I look, I’d be on top of the world!”

17. The biggest surprise for me

One of the biggest surprises to me is that there are so many doctors out there that don’t know about POTS or Dysautonomia. I mean, how are there thousands of us on line with these same issues that nary a doctor can figure out? Boggles my mind!

18. What I’ve learned so far

 I’ve learned so far that you have to be your own advocate when you are diagnosed with an invisible illness. When there are few doctors that know anything about your illness, of which there are few, you have to research on your own and find things that work for you. I’ve learned that a good support system is essential and that friends and family might not always understand, but there are so many sites out there online with people just like me. That is such a comfort.

19. What I want most in life

What I want most in life is to gain control, or as much of it as I can with concern to my health and quality of life.

20. What I look forward to

I look forward to beating the odds!

I might be helpless at times, but I shall never be hopeless J

Grieving Continued…

I’ve continued to read “Coping with Chronic Illness” by H. Norman Wright and Lynn Ellis and have received such encouragement and blessing; I just have to share it.

I’m still reading about grief and what it means for a person dealing with chronic illness. Sadly, this past year I had to deal with grief in the form of the untimely death of my beloved mother. Suffice it to say that I have had to deal with grief in the form of death, and now I have to deal with it in the form of a life altered by chronic illness. Even though the two are quite different, the process of grief is basically the same.

I’ve learned that I am “stuck” in this whole grieving process. Instead of just going through the process, I’m holding on to the feelings of loss and what might have been. When we get “stuck” in this area, it is hard to dig ourselves out of this pit of despair. Emotions are supposed to help us cope and move on, but in some instances, while they are meant to be here for a season, at times they seem to linger. Sometimes we just can’t seem to let them go, hence the “stuck” part. At times these emotions can take up permanent residence and prevent us from moving forward, finding and implementing new coping skills.

So… I am “stuck”. I don’t want to be, but I am still grieving the loss of my old self. It is hard for me to find my new “normal” and to get on with my life. I miss the old me, all the things I used to do and be able to do that now don’t even seem to be in my future anymore. I grieve for my husband and my children and the wife and mother that they once knew, but is now gone and may never return. For the sake of them and myself; I must regain, reboot and reorder my life. I must pick myself up by the bootstraps and keep on keeping on. I owe it to them and to myself. In order to move on I must face the painful reality of my situation. I must overcome my denial and wishful thinking that things will ever be the same again, because the simple fact is, is that things might never be the same. Please don’t mistake this for hopelessness; as I’ve always said, at times I might be helpless, but I shall never be hopeless!  I have no control over my body or my physical state; what I do have control over, however is how I choose to react and respond to the issues at hand. One day at a time, one hour at a time, one minute at a time, and sometimes one second at a time.

In the above book, the authors ask and answer this question: “What can you expect from grief?” (P.104-105)

·        Your grief will take more time and energy than you ever imagined.

·        Your grief will involve many changes.

·        Your grief will show itself in all spheres of your life.

·        Your grief will depend on how you perceive your chronic illness losses.

·        You will grieve for what you have lost already and for what you have lost for    the future.

·        Your grief will entail mourning for the hope, dreams, and unfulfilled expectations you held.

·        Your grief will involve a wide variety of feelings and reaction, more than just the general ones often depicted with grief, such as depression and sadness.

·        Your losses will resurrect old issues, feelings, and unresolved conflicts from the past.

·        You may experience a combination of anger and depression, such as irritability, frustration, annoyance, and intolerance.

·        You will feel some anger and guilt--or at least manifestations of these emotions.

·        You may experience “grief spasms--acute upsurges of grief that occur without warning.

·        You will have trouble thinking about memories, organizational tasks, intellectual processing, and making decisions, depending on your illness.

·        You may feel like you’re going crazy.

·        You may find yourself acting socially in ways that are different from before.

·        You may feel isolated.

·        You may find yourself having a number of physical reactions other than your illness.

·        Others will have unrealistic expectations about you and may respond inappropriately to you (19).

·        The uncertainty of what the future hold denies you the luxury of grieving fully (20).

(19) Rando, Grieving, p. 19, adapted.

(20) Chris McGonigle, Surviving Your Spouse’s Chronic Illness” (New York:

        Henry Holt and Co., 1999), p. 20.

I have a loooong way to go, but go I will, defeat this grief, find the new me and joyfully exchange it for the old.

This is my hope, not only for my family and me, but for all who suffer with chronic illness.

After all, we may be helpless at times, but we shall never be hopeless J

Dealing with Grief

Dealing with grief doesn’t always have to involve death. When living with chronic illness, grief can come in many different ways. In some cases it comes in the form of losing independence, the loss of certain functions and faculties, the loss of what our lives used to be. The difference between grieving over death and grieving through a chronic illness is that many times there is no closure. Things are just lost…out there in space with nary a way to retrieve them. Sometimes we can attempt to get these things back, there are times that they feel lost forever and in some cases, sadly, they are.

I’ve been reading Coping with Chronic Illness by: H. Norman Wright and Lynn Ellis and have been encouraged by what they have to say about this and want to encourage others with their words.

“…Like a silent conspiracy, we seem to have an unspoken agreement not to talk about what we can’t do anymore. Yet with each loss comes the potential for positive change, growth, insights, understanding, and refinement. One reason could be that these hope-filled opportunities are realized or come in the future, and we fail to see that far ahead when we’re in the midst of grief.

The losses of chronic illness ore often hidden. Some of them can be retrieved, some partly recovered, while some are permanent. Although we tend to ignore the losses, the emotional experiences of them are planted in our hearts and minds and no eraser can remove them.

The majority of losses we experience are difficult to grieve over, especially chronic illness. Why? Because losses aren’t usually recognized as such. In chronic illness, there’s no body, no funeral, and no public shoulder to cry on. There is no traditional, socially sanctioned outlet for mourning when the losses aren’t death related. Loss of physical functioning, relationships, and financial resources are not shared and mourned. There is no printed obituary, no ‘remains’ laid to rest, no public gathering to cement the fact and focus love and support on the sufferers.”

“…But the losses in chronic illness, which many seem invisible or insignificant to an outsider, are momentous to the one experiencing them. When it’s difficult to stand or comb our hair, sign our names legibly, climb stairs, or sit in regular chairs—those are major losses. Strength moving to weakness, independence moving to dependence, feeling sick rather than well soon define our lives. Physical losses nullify some hopes and dreams.

Is it the loss that throws us so much? Or could it be our perception or interpretation of what the loss means? We want to stop the decline, which we can’t do, but we can change what the loss means to us. There is a choice! We’re not talking a denial of the devastation but an acceptance of its effects and how to move on from here. Many of us measured our self-worth and identity by what we could do in a day. Now we need to find another guide. The old standards won’t work anymore. And the old standard was never the one God used to value us anyway!”

" … [this] is not a one-time experience but something that needs to be revisited from time to time.”

~Coping with Chronic Illness, Wright, H. Norman and Ellis, Lynn, Harvest House Publishers: 2010, Chapter 6, pages 87-89 (excerpts).

Later, the authors encourage one to “identify the loss or losses you’re experiencing”(pg. 89) and how they have had an impact on your life. They also encourage one to write an “illness and loss timeline” (pg. 89).

I think that it can be rewarding to write these instances on paper. It can be cathartic to just get it off your chest, out of your mind and by putting it in writing can be a liberating experience.

I think that “not talking [of] a denial of the devastation but an acceptance of its effects and how to move on from here” is a key statement, for me anyway. I’ve often heard people say that we, chronic illness sufferers, need to find our “new normal”. Well, quite frankly I don’t want to find a “new normal”; I want my “old normal” back! However, the optimal word in the previous statement is “need”. We need to search for it and we need to attempt to find it and rein it in for our own sanity. We may not be able to ever change our circumstances, but we can choose how we react and respond to those changes. We can try to accept these changes and move forward in an attempt to regain some semblance of normalcy.

After all; we might be helpless at times, but we shall never be hopeless.

This is my wish for all of us out there suffering daily, that we shall never be hopeless!