Category: book review

Book Review: The Five Gifts of Illness

Posted on by Grayson

Disclaimer: I first just want to say that this book was a good one for me to read, but it was a hard one. Many of you know Laura, at least from her blog, who died in December of sepsis treated poorly. I had no idea when I picked up this book that the author fought her own battle with sepsis, staying in the hospital for weeks while Laura was sent home after two days and subsequently died two days after that. The author, like many health activists, is very frank about the things she goes through and this event is no different. She completely describes in agonizing detail what it felt like and how her thoughts wandered and she thought she would die. I had to stop reading the book for a long while due to the shock of reading it and not being able to turn away, so for those of you not interested in that pain, skip pages 97-108 of the book. If you’d actually like to read the excerpt, please contact me and I can get it to you.

Phew.

The Five Gifts of Illness by Jill Sklar is a wonderfully truthful book about the topic not talked about often – the good things that being chronically ill can bring us. She definitely doesn’t play down the bad side of things, but notes how her own life changed when she was able to see the illness as a gift-bringer instead of a demon (all the time anyway).

The five gifts are as follows: relationships, time and being, altruism, emotions, and goals. Our illnesses give us new perspectives on these aspects of life and turn us into people who feel more, laze less, and love with our full hearts.

In the chapter on relationships, Sklar discusses how our illness improves relationships we choose to have, forces us to shelve relationships better left forgotten, and allows us to deepen our relationship with ourselves. I definitely feel as though many of the relationships that I have chosen to continue with friends are deeper than they may have been otherwise. The good ones understand that I can’t eat certain places or how my illness may force me to cancel last minute and they handle it with grace.

In ‘Time and Being’ Sklar points out that many of us have a new appreciation for time – our own time and the time of other people. I, for one, am a stickler about people being late or cancelling last minute because I feel that they don’t understand how much effort I had to put into being okay for whatever our plans are, from resting more in the week leading up to our date or whatever to altering taking medications to avoid a med hangover.

The chapter entitled ‘Altruism’ focuses on how so many chronically ill people start a blog, a website, or at the very least reach out to others via a support group. It is all with the intention of helping each other, sharing the knowledge that we have gained, and helping people get the best care possible.

The chapter on emotions discusses how we must strive to live our lives in balance. It can be very difficult to do, and may require constant re-centering for most of us, but living with our emotions in check – realizing what we should be emotional about, etc – helps to keep us healthy… well, as healthy as we can be anyway. Things like fear, sadness, and stress can weigh us down and actually make our conditions worse.

The final gift of illness is about goals and how we realize our future. We have to come to terms with the goals we can achieve but it doesn’t mean to discard goals a little more out there. Last year, I would’ve said there was no way I would be able to run again after using my cane so much in the beginning months. However, I’m running again… not that I really should I’m sure but whatever!

I won’t go over many of the other chapters leading to the gifts because we don’t want to ruin the whole book for ya! But I will say that Sklar has a very matter-of-fact way of writing that is endearing to chronically ill patients, I believe. I’d definitely recommend it for both the chronically ill person you love (especially yourself!) and the person loved by the chronically ill person?

Brain fog. Whatever. You get my point!

Day 13: The Secret Garden #NHBPM

Posted on by Grayson

Today’s prompt is to share my favorite book and talk about how it ties into my health or my life. My favorite book does both.

My great grandma had MS for many many years. For most of the time I can remember her, she was in a motor scooter – which definitely frustrated her but she turned it into a plus by doing fun things like pretending we were racing cars in my backyard with me and my sister.

One of my only real memories of her before the scooter became a permanent fixture in her life was a visit to the movie theater to see The Secret Garden. The story – whether it be book or movie – always reminds me of her, her tenacity in the face of her illness. It also reminds me of how dangerous it can be to only focus on being sick and that I need to remember to – wait for it – stop and smell the flowers.

The story focuses around a little British girl, Mary, who lived with her parents in India. Her parents were very wealthy and so Mary was raised mostly by servants until the day cholera hit their home. Mary’s parents and many of the servants died. She then has to move back to England to live with her uncle, whom she has never met and is kind of a dick who travels like constantly.

He’s a dick cause his wife died and he decided to hide everything they enjoyed together because it was too painful for him. Eventually, Mary finds out about two of these hidden things – the garden her uncle and dead aunt tended together and their son whom everyone says is very ill. His father has not really ever spent time with him, most likely because of how similar he looks to his mother. The child is ‘so sick’ that he doesn’t see anyone but his nurses and his uncle, a doctor. The child is convinced that he will die he is so ill.

Mary is eventually able to bring the garden back to life and, due to the son’s somewhat princely stature, he is able to get outside and help tend the garden. Being out and about in the end eventually helps him to feel much better. The uncle/father is led to the garden and, despite the fact that he should be pissed beyond all belief, he is pleased – both to see his son well and the garden beautiful again.

You should really find the movie, if only to see Maggie Smith be a hard ass as the main caretaker of the children and the house. She’s like 80 times as badass as in the book but I just assume that’s what Maggie brings to every character.

A Review: After the Diagnosis

Posted on by Grayson

Sooo today’s HAWMC post is supposed to be about Pinterest. I don’t do Pinterest. No offense to those that like it, but it seems slightly silly to me. If I like pictures, I download them or share them on facebook :-p

So instead, I will talk about a book I read recently and enjoyed very much!

After the Diagnosis: Transcending Chronic Illness is written by Doctor Julian Seifter and his wife Betsy. I’m not going to lie – I picked up the book because it has a butterfly on the cover and it was about overcoming illness. But I am very glad that I judged this book by its cover.

Dr. Seifter is a doctor specializing in liver disorders. He sees people facing many chronic and terminal illnesses. He, too, deals with his own illness – diabetes. Throughout the book, he weaves stories about his patients and handling their illnesses along with his realizations and battles with his own health.

The whole book is amazing and a very easy read. I would definitely recommend picking it up. But I’ve earmarked some of my favorite spots of the book and would love to share some bits with you that I found particularly interesting.

One of the biggest themes in the book is that the patient needs to be just sick enough. This doesn’t really apply to them physically, but mentally. If they aren’t sick enough, they might not pay attention to their health and get the treatment and help that they need. If they’re too sick, they’re probably hypochondriacs, very afraid and unable to handle their illness, or unable to see the good side to life. I think at times all patients move between these categories, but it is important to be just sick enough – to be sick enough that you know you need treatment and to be your own advocate, but to not be so sick as to alienate everything your life has been about. You have to live your life while you can. I think the following excerpt from the book hits the nail on the head, especially if you read the book and know the story around this passage:

The chief message of all this: you’re alive until you die. Every minute counts, and relinquishing hope, playfulness, distraction, pleasure consigns you to a premature death, even when death is knocking at the door. The truth is, we’re all on the same train headed for the same destination. When the diagnosis comes, forgetting it – intermittently at least – is not only understandable but sometimes quite adaptive. (150)

One of the other important points that Seifter hits is that society often blames the victim, or in our case the patient. Clearly, because we have an illness that not everyone has we must have done something to cause it – or, maybe, it’s something that we didn’t do. We aren’t juicing enough, taking enough vitamins, smoking enough crack, sacrificing enough animals… Okay, those are ridiculous examples, but so are the real world ones – if only you would take these vitamins… if only you would lose half your weight… if only you would be someone completely different from yourself… His point with all this is that we often turn that blame inward, causing ourselves undue stress – especially in chronic illnesses where not a lot in reality is known. Still’s is a form of JRA. There are a million theories as to how it starts, and anyone of them could be correct. Without a starting point, tries to cure the disease are stabs in the dark. It can be very frustrating.

There are several other really good points that he makes in this book, but I don’t want to share them all. The last one I’ll leave you with though is about couples facing an illness together – something that during the last half of March was a focus for me.

He tells the story of Mr. and Mrs. Valleros, the former of which suffers from amyloidosis. Seifter uses their story to discuss the wonderful art of being a couple and tackling illness together. He says that the “chief stumbling block to an authentic relationship is the problem of dependency” (203). It’s a delicate balance, he points out. If the mix isn’t right, the ‘well’ person can become too dominant and overbearing, or the sick person can become too dependent. This couple manages the balance swimmingly, even though Mr. Valleros is essentially dying.

One of the things that I really took to heart was Dr. Seifter’s words on illness in a relationship:

A marriage [or relationship] requires room for two, and illness tends to constrict the space. How can a couple thrive when it’s so easy to let illness close things down in ways that stunt growth and liveliness? How can the necessary collisions between two different people be fruitful rather than bruising? One way is to put the illness in its place. (205)

Another couple in this section fights the illness butting into their lives by intermittently paying attention to it and not letting the illness completely run things. The ‘well’ person in this particular relationship points out that they take care of each other. If one of them isn’t feeling well, the other is there to take care of. He also says that he doesn’t think of his wife as being sick.

And maybe that’s the key to all of this. A few weeks ago, I interviewed my boyfriend. While my illness can limit what we do – though I try my damnedest! – he doesn’t look at me and see something sick. He looks at me and sees a pretty girl who is really quirky but fun to be with and is very loving. Those are my words, but in the last few weeks he’s said as much – sometimes even verbally you guys. WHOA.

I think that his attitude, of my illness being just a fact about who I am and NOT being who I am makes all the difference.

So, getting back to the book…

You guys should read it. I teared up in spots, and was amazed by others. I found new ways of looking at my illness, and am trying to be ‘just sick enough’ instead of everything in my life being about my illness like it has been for the past few months. If this book has helped me to realize some things about myself – stubborn ol’ Taurus that I am – I can’t imagine what it might be able to do for you. At the very least, the writing is enjoyable to read and flows very well. I found myself not wanting to put it down. I don’t have those feeling often.

“Partners in Healing” – A Review

Posted on by Grayson

As you may know, for the next little while we will be focusing on people in our support group, the unsung heroes of the chronically ill. In keeping with this theme, I picked up a book recently designed to help our loved ones handle the pressures of the effects of illness in their lives and how they can help us the most.

If you have followed my writings and crazy rantings for a while, you might remember that I kind of have a thing for Buddhism. And I’ve also discussed a few other Shambala publications in the past, mostly relating to handling abuse and negative memories. Honestly, though, I picked this book based on description. I totally didn’t even know it was a Shambala book until I finished it.

Dr. Collinge has a background in alternative medicines, which I also didn’t know before starting the book. While it’s not a horrible thing, this explained the few chapters in the book I didn’t much care for – on things like Reiki and other healing exercises. I’m not completely discounting those therapies. There are some people that are helped by them. However, from what I have investigated on my own, they are not as viable as others can be. This includes talking with Reiki healers who tried very hard to get me involved each time we met, almost telemarketer-like. It was off-putting to say the least.

Some of my favorite sections of the book include the bits on massage and snuggling. I happen to be a very touchy person, and snuggling has a very calming and pain relieving effect on me. If it’s only a finger touch mine, that’s enough to be helpful if the intention is there.

Speaking of intention, another section I enjoyed was chapter 28 on tonglen mediation. If you don’t know tonglen, please click here and let one of my favorite authors, Pema Chodron, explain in more detail! Short version: essentially, it’s a meditation practice in which you breathe in the bad and breathe out the good. It’s sounds counter-intuitive, I know, but it is also a kind of healing energy. You breathe in the pains, worries, and sorrows of a specific person (or region or the world – that’s a little much though!), and you breathe out good thoughts, hopes, and dreams for him or her (or them!). It’s all about the intention with with you practice tonglen. Collinge notes that the idea of taking on the pain of the suffering person is a crazy overwhelming thought. Again, it’s one of those things that might not work for everyone. But I can tell you from my experience that, when someone I love is hurting, this practice really helps me slow down and realize that a) their pain is not related to me, and b) I can help the most by just being there to listen and absorb and support.

One of the things I liked the most about the book is how it touches on the importance of taking care of yourself. In a caregiver/loved one role, it is really easy to ignore your issues because sometimes it seems like the other person has more pertinent issues. You don’t want to seem like you’re trying to complain or get into a competition on who feels worse. But remember, you cannot take care of another if you don’t take care of yourself. If you spend all your time helping others, but neglect to eat right, you’re going to suffer a heart attack. And then what happens to the people you help?

Section 34, to me, is the most important section of the entire book. It talks about communication and choosing the right words when you speak. I think a lot of issues in relationships where one (or both) have a chronic illness stem from communication issues. One party is afraid to speak up, or another doesn’t know how to express frustrations.

One of the most important things in this section isn’t even a recommendation, but a list of results from a study on relationships and illness. Patients in the study seemed to respond best when their partners shared their own feelings and concerns, used humor to relieve tension, and be present in that moment and those feelings without jumping ahead to how to fix everything. Other studies point out that women with breast cancer say that they feel more connected with their partners when they express their feelings on the patient’s illness, and that they do better with partners who can empathize with them and could make it through emotional conversations. Less communication between patients and their partners surrounding illness seems to be destructive in a relationship as well.

The section goes on to talk about the bonds that are formed when those with illnesses disclose their feelings, essentially bearing what may be their most vulnerable and intimate parts/thoughts to partners. That’s probably part of why the thought of doing so is so intimidating and scary. Being a partner is about sticking through the good and the bad – if a partner doesn’t know all of the bad, don’t expect him or her to really stick around for the good. To be honest, sometimes I wonder if my boyfriend and I would still be together if I hadn’t started this blog and begun to show the weakest, most vulnerable parts of myself. It’s an ongoing process, obviously, and can’t be done overnight. There are still parts of me that I have a hard time sharing, and the same goes for him. But we work on it, and that makes it work.

In some of the following sections, Collinge makes reference to the importance of thinking positive along with your patient/partner. In doing that, it helps to appreciate the things you can do together and with each other rather than what you miss doing. If I dwell on the fact that I can’t run anymore, my pain seems to be worse. It’s just simple as that.

The rest of the book talks about ways to improve relationships centered around illness, from enjoying some good tea to running a spa like bath for your sick chick *hint hint to my handsomest blog reader*

One of the interesting things I’d like to touch on is on sleeping… separately. The boyfriend and I live in a two bedroom apartment, which sometimes gets me crap from my friends who think it’s weird. Sometimes it’s hard for me to handle too, because I SO much love to snuggle and it really helps me feel comforted, especially at night. Sometimes (like the night I’m writing this for instance!) it’s a good thing, because my energy at someone’s bed time is a little too high for sleeping. I also have a hard time hearing my alarm in the morning and then hitting snooze A LOT, which I know really can be extremely annoying… It is from the other room anyway I’m sure 🙂  Collinge actually recommends sleeping alone. It can help, especially illnesses like fibromyalgia that are heavily affected by loss of REM sleep. And it doesn’t really hurt that it limits my exposure to someone having a cold or something like that, should that happen.

Overall, I think that much of the information in this book is going to be so so helpful for partners and loved ones of ill people. I might not agree with everything in it, but even as a partner to a non-ill person (he’s so much better than normal by any means 🙂 ) I found the tips helpful and easy to relate to, just for everyday life. The biggest things to take away from the book are that communication is even more important in illness-related relationships, to try to stay positive, and that a care giver/loved one HAS HAS HAS to be able to focus on their own health as well. If you’re not there to support me on my hard journey, who is going to do it you know? Sometimes I can be distant – we all can – but I really do need you around and I so much appreciate everything that you do to help me, more than you’ll ever know.

If you’re interested in the book, use the info below to find it!

“Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness” by William Collinge, PhD. Published in 2008 by Shambala Publications, Inc. ISBN: 978-1-59030-415-0

Out of Joint: a review

Posted on by Grayson

I finished my papers finally and, while I’m not super happy with them, I think they will do. But that left me with some free time yesterday. I know, weird right? So I picked up a book that my boyfriend checked out of the library – “Out of Joint: A Private and Public Story of Arthritis” by Mary Felstiner.

For the first time in years, I picked up a book and devoured it. Somehow I think it was because some of it was so familiar.

It’s a great book, but I found it really difficult to relate to… because much of the book centered around how things changed for Mary and how she missed her life before RA… And I don’t have that.

When I remember, I seldom remember pain – or, if I do, it is a lot less intense, I’m sure, than it actually was at the time. But that is all that I remember really. How many people have lots of memories from before kindergarten anyway?

Her book is good, and definitely worth a read – especially for our significant others. I’m really excited for when my boyfriend gets to that book, because I think it’ll help him understand me a little better – how I don’t like to talk about my arthritis, how I can still be so worried and trying to help others despite my own condition, and many of my fears.